HEROES - Fall 2015

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STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION • FALL 2015

Slam DUNK

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Dr. David Eisenstat tackles the origins of childhood cancer head on

Derek Schenk is game to be a role model as Champion Child, presented by Walmart

THE OUCH FACTOR

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FOR THE KIDS

Dr. Samina Ali examines ways to reduce children’s pain

FIELD WORK Edmonton Eskimos players count trips to the Stollery among their team efforts

PM 40012957

PLUS: MEET ONE OF THE PROVINCE’S FIRST PEDIATRIC CARDIOLOGISTS

THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC AUTO GROUP

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Register today! Serdachny Power Skating and Hockey founder, Steve Serdachny, created the Stollery Family Day Classic tournament to foster philanthropy and a spirit of giving in young people. The tournament has raised $1.4M for the Stollery since 2011. With generous gifts from donors like you – and $375,000 in funding from the 2014 tournament – the Stollery Children’s Hospital opened its renovated, state-of-the-art ophthalmology clinic in 2015. “The upgrades to the clinic’s physical space, network and equipment mean patients benefit from a clinic that presents the highest standard of care,” says ophthalmologist Dr. Carlos Eduardo Solarte. Serdachny, and his team behind the Stollery Family Day Classic, aren’t slowing down. The 2016 tournament takes place on February 12-15 at the Terwillegar Community Rec Centre in Edmonton.

Register and donate at

FamilyDayClassic.com Proudly supporting

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A Joy thAt’s shAred is A Joy mAde double.

sAy it with An eCArd

Making a donation to the Stollery Children’s Hospital Foundation is the perfect way to spread joy this season. With a minimum donation of $10, we will provide you with an eCard to share with your valued employees, customers and clients, and your family and friends. Share your holiday cheer with the special people in your life by letting them know you’re helping to send more children home to their families. Visit stollerykids.com or contact our Community Initiatives team at 780.433.5437 to make our eCards a part of your holiday giving tradition.

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contents FALL 2015

Departments 5 THE POWER OF DISCOVERY A message from the president and CEO of the Stollery Children’s Hospital Foundation

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6 FOUNDATIONS OF LIFE 24 MILESTONE Supporting the Stollery has long been a part of team culture for the Edmonton Eskimos Football Club

Stollery Family 26 RESEARCHING THE WAY

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A doctor’s life’s work pays off, saving lives and changing how we view pediatric cancer

30 HEALING THE HURT Dr. Samina Ali pursues every option to reduce pain for her young patients at Stollery’s emergency department

37 SERVICE CALLS Chuck Neill isn’t someone you’d often expect to see at the Stollery, but he helps keep all the medical equipment operational

Features 12 BENCH TO BEDSIDE Through the Stollery Children’s Hospital Foundation, WCHRI funds research that stands to better youngsters’ health outcomes

14 LIKE A CHAMP A series of tumours and brain surgery can’t keep this Stollery kid down

29 WHY I DONATE How family members of a young boy with a fatal congenital defect were inspired to found a charity

34 CORPORATE HERO Thanks to Co-op’s Game Day Approved program, your purchase can make a difference

36 VOLUNTEER HERO One Stollery board trustee is proud to be part of a tradition of philanthropy

38 THE LAST WORD

18 AGAINST THE ODDS Fraternal twin who was not expected to survive looks forward to a bright future despite a lifetime of hospital stays and surgeries

21 MIGHTY MIA How one blonde-haired, blue-eyed superhero proves a formidable opponent in the fight against juvenile diabetes

22 HEART FELT

14 ON THE COVER: Derek Schenk is having a ball as this year’s Champion Child, presented by Walmart. PHOTO: Cooper + O’Hara STOLLERYKIDS.COM

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Pediatric cardiologist Dr. Neil Duncan recalls a lifetime of helping kids get healthy

32 BROTHERLY LOVE Teen philanthropist gets her inspiration to fundraise and be a mentor from her younger sibling

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FALL 2015 VOL 3 • No. 4 Stollery Children’s Hospital Foundation ASSOCIATE EDITOR: ALEESHA JEX PRESIDENT & CEO: MIKE HOUSE, MBA, CFRE Stollery Children’s Hospital Foundation

Thank you!

The Stollery Children’s Hospital Foundation and the Edmonton Rowing Club thank you for supporting the 10th Annual Row for Kids! Your dedication and effort helped us raise more than $180,000 in donations! These funds will support Stollery kids who are sick or injured, as well as fund youth rowing programs at the Edmonton Rowing Club. Special thanks go to our amazing sponsors, rowers, donors and volunteers!

BOARD OF TRUSTEES: CHAIR: T. MARSHALL SADD, Lloyd Sadd Insurance Brokers VICE CHAIR: RICHARD KIRBY, MBA, Felesky Flynn LLP LAURIE ANDERSON, CMA, WAM Developments RICHARD BALAN, RTA Holdings Ltd. KELLY BLACKETT, Canadian Western Bank JIM CALDWELL, The Brick Group JONATHAN CHIA, CA, Melcor Developments Ltd. DR. ALF CONRADI, Stollery Children’s Hospital LINDSAY DODD, MBA, Savvia Inc. DOUGLAS GOSS, Q.C., AOE, Bryan & Company LLP NOAH JONES, BA, CFP, CLU, ROD MACKENZIE, P. ENG., Legato Resources Ltd. LEIGH-ANNE PALTER, MBA, Chestermere Utilities Inc. GORDON PANAS, CA, PCL Constructors Inc. STEPHEN PETASKY, LUXUS Group RYAN POMEROY, Pomeroy Lodging LP IAN W. REYNOLDS, Q.C., ICD.D, Bennett Jones LLP DR. WILLIAM J. SHARUN, ThirtyTwo Dental MICHEAL WEBB, MacLachlan and Mitchell Homes Inc. DR. GREG ZESCHUK, Blind Enthusiasm Group EX OFFICIO: DR. RICHARD FEDORAK, University of Alberta DR. SUSAN GILMOUR, University of Alberta and Stollery Children’s Hospital DR. CHRISTINE KYRIAKIDES, Stollery Children’s Hospital TRACY MACDONALD, Stollery Children’s Hospital DR. DAVID MADOR, Alberta Health Services VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY EDITOR: SHELLEY WILLIAMSON COPY CHIEF: KIM TANNAS ART DIRECTOR: CHARLES BURKE DESIGNERS: SHELBY JOHNSON, BEN RUDE PRODUCTION MANAGER: BETTY FENIAK PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTION: KAREN REILLY

SPONSORS:

CONTRIBUTING WRITERS: Allison Badger, Lyndsie Bourgon, Sydnee Bryant, Debra Clark, Jen Janzen, Jacqueline Louie,Nadia Moharib, Shelley Newman, Cory Schachtel, Seamus Smyth, Chris Scheetz CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Cooper + O’Hara, Buffy Goodman, Anthony Houle, Mathew Martin, Tayson Martindale,Heff O’Reilly, Darryl Propp, Romy Young Photography

2015 ORGANIZING COMMITTEE: Nathan Schmidt, Chair Jordan Gulayets, Incoming Chair Lynn Zwicky, Row For Kids Director Lydia Schreier, Committee Member Rob Swart, Committee Member Scott Matheson, Founder & Honourary Chair Mike Steacy, Past Chair

Thank you for supporting

ABOUT THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION The Stollery Children’s Hospital Foundation funds excellence at the Stollery Children’s Hospital. Excellence comes in many forms: specialized equipment; sub-specialty education to train the brightest medical minds; research to discover new treatments and cures; and specialized pediatric programs that improve family centred care, and patient and family outcomes. Content may not be reprinted or reproduced without permission from the Stollery Children’s Hospital Foundation.

HEROES is published for the Stollery Children’s Hospital Foundation by Venture Publishing Inc., 10259-105 Street, Edmonton, AB T5J 1E3 Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276 circulation@venturepublishing.ca Printed in Canada by Burke Group of Companies Limited. Heroes is printed on Forest Stewardship Council® certified paper Publications Agreement # 40012957

* For more information on fundraising targets and expenses, please contact the Foundation at 780.433.5437 (KIDS).

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Return undeliverable Canadian Addresses to: Stollery Children’s Hospital Foundation 1502 College Plaza, 8215 - 112 Street, Edmonton, AB T6G 2C8 All fundraising totals are listed as gross unless otherwise specified. For more information on fundraising targets and expenses, please contact the Foundation at 780-433-5437.

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FOUNDATION message

The Power of Discovery BY Mike House, MBA, CFRE President & CEO, Stollery Children’s Hospital Foundation

IMAGINE A WORLD WITHOUT RESEARCH. We are so dependent on new data and discovery to satisfy our natural curiosity of the world around us, and to improve our day-today experiences, that to think of it absent from our lives is almost incomprehensible. Imagine. No knowledge of the human epigenome that can turn on or off individual genes in DNA. No evidence of a black hole 12 billion times larger than the sun. No discovery of the first new antibiotic in 30 years. And to think, all of these discoveries occurred since January of this year. The importance of research in our lives cannot be understated. That’s why for the last decade, the Foundation – with help from our generous donors – has invested in thousands of pediatric research programs to assist the Stollery Children’s Hospital in growing its critical mass of experts and researchbased practice. STOLLERYKIDS.COM

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As the primary funder of the Women and Children’s Health Research Institute (WCHRI) at the University of Alberta, our investment of $30 million over 10 years represents close to 100,000 individual donors. Through WCHRI, the Foundation proudly supports the majority of the University’s 11 faculties and the many research programs that originate from the faculty of medicine and dentistry, mainly the department of pediatrics. In the last year alone, we provided $3.8 million for children’s health research, including funding 135 research grants, of which 80 were trainee and student awards. I encourage you to read “Bench to Bedside” on page 12 to learn more about this amazing group of award-winning researchers, clinicians and academics. We are so proud of WCHRI’s many successes these past ten years. Evidencebased, pediatric research not only addresses the unique health care needs of kids, it makes sure families and patients receive the latest medical knowledge and advanced care. A prime example of this is Dr. David Eisenstat (One to Watch on page 26), whose ideas around cancer in children were considered radical 20 years ago. However, through his leading research supported by WCHRI, Dr. Eisenstat is now gene-sequencing mutations in childhood cancers and comparing them to adult cancers with surprising results. It’s this type of ground-breaking study that will have a tremendous, positive impact on better understanding and treating childhood cancers for decades to come. After all, there is a direct connection between research and clinical practice. Clinical researcher and physician Dr. Samina Ali (Meet the Specialist on page 30) works with patients in emergency settings. She may have several research projects on the go at any one time but all of it leads back to helping young patients cope with increased anxiety

and pain management. This past year, Dr. Ali and her research team conducted a lengthy study involving 500 pediatric emergency patients that assessed how children respond to various pain relievers. The results will help clinicians who administer pain relief and more importantly, ease the comfort of the kids in the Stollery’s pediatric emergency department. None of this would be possible if not for the power of research. Research can also be applied to many different areas of the Hospital. WCHRI research programs run the gamut from complex genetic disorders, childhood obesity and diabetes, to heart disease, kidney disease and inflammatory bowel disorders. Science has proven that early prevention and care are much more effective than treatment. We also know that by investing in start-up grants for new recruits, there’s an increased incentive for world-class researchers to move to and practice in Edmonton. On October 28, we joined our partners at the University of Alberta in celebrating National Research Day, dedicated to recognizing the many talented men and women who dedicate their lives to science and discovery. I want to thank the more than 400 researchers and clinicians at WCHRI who continually test and push the limits of modern science to the benefit of future generations of children throughout Western Canada. Research changes lives and in the words of Stephen Hawking, “no one undertakes research with the intention of winning a prize. It is the joy of discovering something no one knew before.” Thank you for continuing to support our Foundation and the Hospital. We hope that by thumbing through the pages of Heroes, and by visiting TheDonorDifference.ca, you will further discover the impact of your generosity. Enjoy our fall issue and have a happy and healthy season. F A L L 2 0 1 5 | HEROES

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foundations OF LIFE

When Life Gives You Lemons EVER SINCE SHE WAS FOUR YEARS OLD, PHILIPPA MADILL

PHOTOS: COURTESY PHILIPPA MADILL

has been raising money for the Stollery Children’s Hospital Foundation by hosting lemonade stands. Philippa says the idea to have a lemonade stand started in Lacombe and continued in Drayton Valley when her family moved there. She wanted to do something to raise money and, in a classic childhood move, decided on lemonade. Now 13, Philippa’s lemonade stands also feature cookies, cupcakes and energy bars because she enjoys an active lifestyle and holds most of her lemonade stands at charity runs and bike rides. She held two lemonade stands this year, one in May and the other in September, the latter to coincide with the town’s DV100 Race or Ride event. Philippa hopes to keep making lemonade and treats for Drayton Valley’s signature events for many years. She says baking and donating money to the Foundation are her favourite things about hosting these lemonade stands each year. She often involves her friends in the project, making it a social event, too. And she has her own connection to the Hospital. Philippa and her sister both have scoliosis and visit the Stollery regularly. “When I saw all the kids in the Hospital, I knew that I wanted to help,” she says. Initially, Philippa had a goal to raise $1,000. After she surpassed that, she didn’t make another fundraising goal and instead has decided to just keep raising money for as long as possible. “It makes me feel good because I know I’m doing something,” Philippa says.

DONATE A CAR CANADA ACCEPTS VEHICLE DONATIONS FOR THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION. To donate a car, truck, RV, boat, motorcycle or other vehicle, simply visit donatecar.ca and complete the DONATE NOW tab. Since 2011, Donate a Car Canada has given $70,000 to the Stollery Children’s Hospital Foundation.

THANK YOU FOR YOUR SUPPORT!

FRUITS OF HER LABOUR: Philippa has raised about $1,500 in nine years.

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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Golfing to Remember

PHOTOS: COURTESY PHILIPPA MADILL

AFTER THE HORN SOUNDED OFF TO SIGNAL THE START of last year’s golf tournament, the silence was broken by the ping of everyone taking their first swing. “I thought that was so special, and I just thought that if Kale was here with us today, how cool he would have thought all this was,” says Megan Raichel, a Par for Kale committee member. The Par for Kale Annual Memorial Golf Tournament and the Kale James Marshall Memorial Foundation were established in 2014, after Kale tragically died at the age of seven due to a severe and extremely rare asthma attack the year earlier. Kale’s parents Jamie and Ashley, as well as close family and friends, started the golf tournament as a way to give thanks and give back in Kale’s honour. Last year’s inaugural tournament was a huge success, with more than $17,000 raised for the Stollery Children’s Hospital Foundation, greatly surpassing the original fundraising goal. The funds are meant to bring awareness to the seriousness of asthma and respiratory illnesses. “Teaming up with the Stollery has been great. They’re fantastic,” Megan says. “Their support, their ideas, their helpfulness is amazing.” Kendra McMurchy, who’s also a committee member, remembers Kale as a remarkable little boy who was a sports enthusiast. “He was extremely talented and no matter what it was he wanted to do, if someone could show him how, he would do it,” she says. As a surprise during dinner at last year’s golf tournament, the Minor Hockey Association and Winner’s Way Source for Sports of Fort Saskatchewan announced that they want to honour Kale’s memory as well and made a 10-year commitment to the cause. Called Play for Kale, it will allow one child to play hockey who would otherwise be unable, with the Minor Hockey Association waiving all hockey fees and Winners Way Source for Sports providing full outfitting. August 22, 2015 marked another day full of family and friends joining together and spending time with one another at Fox Run Golf, raising money and proudly supporting the Foundation. “It is our vision to continue to join hearts with the Stollery as we honour Kale, and we LAST YEAR’S hope the tournament goes on indefinitely,” TOURNAMENT says Megan, noting the entire Par for Kale RAISED committee shares her sentiments.

Company Kindness FOR THE PAST FIVE YEARS, MANSHIELD CONSTRUCTION has been holding annual golf tournaments to benefit the Stollery Children’s Hospital Foundation. Held on September 3, 2015, this year marked the company’s fifth annual event. The tournament was launched by Lisa and Peter Schwind and Kevin Juby who from the beginning wanted to do something for a cause, according to Lisa. “We have a soft spot for the Stollery or anyone who takes care of children,” she says, adding that their son had an injury at birth and spent most of his life in a pediatric hospital – Sick Kids Hospital in Toronto. With this personal inspiration, they settled on golf as something their clients would like. The last five years of the tournament raised $115,000 for the Stollery Children’s Hospital Foundation. The Foundation has directed the money they’ve raised to the Critical for Care campaign at the Stollery, Lisa explains. She believes more people and companies are catching on to the worthiness of this cause as she has seen an increasing number of people donating ahead of time. Attendees are also encouraged to donate at the event itself, where there is a live and silent auction. Lisa says one of her favourite parts at the tournament is when Foundation representatives give progress reports. “I just find it exciting that there’s people pouring in,” she says, “and investing into this really worthy cause.”

$17,000

RIGHT ON PAR: Manshield Construction has raised $115,000 for the Foundation since 2011.

STOLLERYKIDS.COM

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foundations OF LIFE

Making Hospital Stays Less Scary DAVID ROJEK REMEMBERS IT WELL, THE MOMENT HE and his friend Momen Al-subaihee saw a father weep with happiness after seeing his own child smile for the first time in a year. David is involved with Spirit Halloween Stores’ Spirit of Children program, which brings Halloween fun to kids staying in the Hospital, and it was one of these events that allowed that father and son to forget their worries for a while. David is the vice-president of media at Sonar Media Solutions, and he does marketing for Spirit Halloween. Momen has the franchise rights to Spirit Halloween stores in Alberta. The Spirit of Children program was founded in 2006 and provides fun during Halloween and funding yearround to child life departments within children’s hospitals. Every year, Spirit Halloween hosts parties at children’s hospitals, which include costumes, decorations and goody bags. David says that Momen has expanded on the corporate program since he opened his first store and started raising funds in 2010. Since then, they’ve raised about $305,000 for the Stollery Children’s Hospital Foundation. From bringing in face painters to clowns, these additions are out-of-pocket expenses on Momen’s behalf. In addition to the Halloween party at the Stollery, Spirit’s instore fundraising money has been used throughout the province for purchasing educational and entertainment items, funding field trips, adding staff to keep playrooms open longer and developing rehabilitative art programs among other things, David says. He says the Spirit of Children program touches thousands of pediatric patients and brings smiles and laughter to children who might otherwise miss out on Halloween. “We don’t expect it, but the families definitely pull us aside and thank us profusely for doing this for their kids,” he says. Last year, Spirit Halloween Alberta raised more than $73,000 for the Foundation – and the goal this year is $100,000. In hosting these Halloween parties, David says that he and Momen have realized how much more this means than just free costumes and toys, and that Spirit of Children gives kids and parents an escape and something to feel good about.

THAT’S THE SPIRIT: Spirit Halloween has raised $305,000 for the Foundation since 2010. Last year, Spirit Halloween raised more than $73,000. 8

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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ILLUSTRATION: TAYSON MARTINDALE

PHOTO: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION STOLLERYKIDS.COM

BORN AT 26 WEEKS, JACOB MCINNIS weighed one pound and six ounces. Jacob was doing well until he contracted meningitis hydrocephalus at two weeks old. The hydrocephalus caused a blockage in Jacob’s skull, preventing his spinal fluid from draining and causing Jacob’s brain to swell. A shunt was inserted into Jacob’s skull to drain the fluid into his stomach, a procedure repeated many times throughout his life.

As of June 2014, Jacob, who also had cerebral palsy and a heart condition, had undergone 96 surgeries on his head and stomach at the Stollery Children’s Hospital. It became his home away from home. “Jacob was the happiest child and he was so grateful for all the small things,” Jacob’s mom Soula said. Jacob passed away on May 27, 2015. Tayson Martindale drew this comic in his honour. F A L L 2 0 1 5 | HEROES

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Save the Date The Stollery Children’s Hospital Foundation is honoured to have caring people in the community creating events with proceeds supporting the Foundation, benefitting sick and injured children. We hope you will have an opportunity to enjoy or participate in these activities. For more information, and a complete list of upcoming events, visit stollerykids. com/events. For more information on fundraising targets and expenses, please contact the Foundation at 780-433-5437.

FONDUE FOR LITTLE MIRACLES DATE: November 2015 LOCATION: The Melting Pot, 2920 Calgary Trail, Edmonton The Melting Pot of Edmonton is excited to launch its sixth annual Fondue for Little Miracles Campaign. Throughout the month of November, Melting Pot staff will work hard to raise funds for the Stollery Children’s Hospital Foundation through the sale of “Fondue for Little Miracles Cards” to restaurant guests, friends and family. For every $10 donation made, the donor will receive a $20 card to be used towards a future purchase at The Melting Pot of Edmonton. The restaurant hopes to raise $20,000 and you can help. Please call 780-465-4347, visit their store or check out meltingpot.com/edmonton for details.

17TH ANNUAL CORUS RADIOTHON DATE: January 19 and 20, 2016 TIME: 5:30 a.m. to 6 p.m. LOCATION: Lobby of the Stollery Children’s Hospital 8440 112 Street, Edmonton Tune in to Corus Radio Edmonton’s CISN Country 103.9, 92.5 Fresh FM and 630 CHED as they broadcast live from the Stollery Children’s Hospital. Children, families and health care professionals share inspiring stories about the Hospital. Make your donation by visiting stollerykids.com.

CHARITY BEARS DATE: November 23, 2015 until sold out LOCATION: Participating BMO, CIBC, RBC Royal Bank and Scotiabank locations. Also available at the Stollery Kids Store, in the Stollery Children’s Hospital lobby, 8440 112 Street, Edmonton. This year’s Charity Bear is named Ben in honour of Ben Woodlock, our 2014/15 Champion Child, presented by Walmart. The large bear retails for $20 and the small for $12. Purchase your Ben Bear today and support Stollery Kids like Ben.

EDMONTON INTERNATIONAL NEW YEAR’S EVE GALA DATE: December 31, 2015 TIME: 7 p.m. to 2 a.m. LOCATION: Fantasyland Hotel, 17700 87 Avenue, Edmonton. Edmonton International New Year’s Eve Gala: a spectacular evening of food, fun and entertainment. Net proceeds from the silent auction benefit the Stollery Children’s Hospital Foundation. Visit edgala.com for details.

5TH ANNUAL STOLLERY FAMILY DAY CLASSIC DATE: February 12 to 15, 2015 LOCATION: Terwillegar Rec Centre, 2051 Leger Rd NW, Edmonton The Stollery Family Day Classic is focused on children, families, active living and good health. The hockey tournament promotes awareness and support for the Stollery Children’s Hospital among youth and the community at large. For more information, or to volunteer, sponsor the event or donate items to the silent auction, visit familydayclassic.com.

14TH ANNUAL HAIR MASSACURE DATE: February 24, 2015 LOCATION: Mayfield Toyota Ice Palace at West Edmonton Mall, 8882 170 Street, Edmonton Hair Massacure kicks off in January with many participants colouring their hair pink. The campaign culminates with a massive head-shaving and hair-donating event held at the West Edmonton Mall Ice Palace on February 24. This event raises funds for the Make-A-Wish Foundation, Northern Alberta and the Stollery Children’s Hospital Foundation.For information or to register, visit hairmassacure.com.

IMPORTANT NOTE REGARDING TAX RECEIPTS: To be eligible for 2015 tax receipts all donations must be received by December 31, 2015. Donors wishing to claim their donations for the 2015 tax year must ensure that the funds are received (or postmarked) by December 31. Donations received after this date will be receipted for the 2016 calendar year. 10

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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WHEN YOU PURCHASE ITEMS AT THE NEWLY RENOVATED STOLLERY KIDS STORE, YOU’RE SUPPORTING STOLLERY KIDS! Check out our variety of items for kids of all ages. Arrange a delivery to a child’s room in the Stollery Children’s Hospital. Call us at 780.433.7445 or visit us in the Stollery Children’s Hospital lobby at 8440 112 Street, Edmonton.

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Pur c item hase po pula s lik e r : ❤ i nfan t ❤ f amil learning y ❤ s ticke games toys r ❤ o ur n s of S ew line to mer llery chan dise !

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Bench to Bedside

ILLUSTRATION: HEFF O’REILLY

The Stollery Children’s Hospital Foundation provided $3.8 million to the Women and Children’s Health Research Institute (WCHRI) for children’s health research in 2014-2015. This is part of the Foundation’s $30-million, 10-year investment (from 2006 to 2016) in research.

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WCHRI (BY THE NUMBERS): • Has a membership of more than 400 leading researchers, clinicians and academics; • Was founded in 2006 as a partnership of the University of Alberta and Alberta Health Services with funding from the Stollery Children’s Hospital Foundation and Royal Alexandra Hospital Foundation. • 135 research grants and programs were funded by the Stollery Children’s Hospital Foundation in 2014-2015, including 80 trainee and student awards.

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WHY PEDIATRIC RESEARCH? • It addresses children’s unique health care needs. • It ensures best evidence based health care is available for children. • Research-integrated hospitals, such as the Stollery Children’s Hospital, offer patients and their families the latest advances in medical knowledge and care. • Many chronic diseases have their origins early in life; early prevention and care are more effective than later treatment.

SCOPE OF RESEARCH: • Research areas span from complex genetic disorders to heart and kidney disease, cancer, obesity, diabetes and inflammatory bowel disease and is supported through grants, recruitment and retention awards, endowed chairs, student and trainee awards, partnerships, and scientific knowledge exchange programs.

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WHERE THE MONEY GOES: • Hospital Research Capacity Building funded four research teams in the Stollery Children’s Hospital: the pediatric emer gency research department, pediatric critical care research team in the Pediatric Intensive Care Unit, the Stollery single ventricle outcomes team and the Edmonton Pediatric Inflam matory Bowel Disease Centre. • Eleven seed grants were awarded to support immedi ately relevant or rapidly trans latable research in the Stollery Children’s Hospital. • Start-up grants were awarded to two new recruits, providing great incentive to world-class researchers to come to Edmonton.

STOLLERYKIDS.COM

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CURRENT AND ONGOING RESEARCH: • Studying the consequences of fetal iron deficiency, which occurs in one out of four preg nancies, on children’s lifelong health, including an increased risk of cardiovascular dis ease, obesity, Type 2 diabetes and cognitive and behavioural problems. Resveratrol, which is found in grapes and other plants, is being tested as a possible treatment. • Exploring the effectiveness of a promising combination drug therapy for juvenile granulosa cell tumours, a lethal ovarian cancer that strikes young girls and adolescents.

• Reducing complications in heart transplants that are caused by antibodies devel oped in response to the mechanical hearts implant ed in young cardiac patients before heart transplants. • Improving the peer acceptance and social participation for children with autism, who are at a high risk of bullying and being excluded. • Better diagnosis and treatment for necrotizing enterocolitis, a serious intestinal disease that afflicts preemies.

• Studying the composition of gut bacteria in three month-old babies to help predict obesity by age three. Identifying children who are at risk of obesity can lead to early interven tion and better treatment. • Studying the impact of noise levels in pediatric intensive care units on patients. • Evaluating the effective ness of various stuttering treatments for school aged children.

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feature HERO

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PHOTOS: COOPER + O’HARA

WINNING ATTITUDE: Derek Schenk, 17, this year’s Champion Child, presented by Walmart, has faced numerous health challenges throughout his life but maintains a positive attitude about the future.

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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LIKE A

CHAMP BY Jen Janzen

A series of tumours and brain surgery can’t keep this Stollery kid down

PHOTOS: COOPER + O’HARA

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EREK SCHENK HAS ONE IMPORTANT PIECE OF ADVICE

believe it’s happening,” says Art of that post-CT-scan conversafor any child heading to the Stollery for major surgery: tion. “Then you see a picture of your kid’s head on a screen with a take it one day at a time. bloody baseball on the back of his head.” That mantra is what brought the 16-year-old through Derek said the diagnosis was almost a relief. It meant there was a difficult recovery after having brain surgery to remove a cancer- a name for the problem he’d been having and, armed with a name, ous tumour. Sometimes, there were so many setbacks that it he had a much better chance of fighting it. “I was sad that it was a seemed like he would never get out of the Hospital. But Derek brain tumour – no one likes hearing those words,” he said, “but at knew he couldn’t quit, so he focused his energy on moving the same time I was like, ‘Cool, so what’s the next step?’ ” forward. He and Art headed for the Stollery the next day for testing. “I’m a pretty logical person, so I just have always thought if “They put him through every test imaginable,” says Art. “Derek’s something has to happen, it may as well happen,” Derek says. got a heart murmur so they even checked that to make sure it “There’s nothing else to do but deal with it.” wouldn’t interfere with the surgery.” It was last September when Derek first noticed something Derek also saw an ear, nose and throat doctor, who explained his was wrong. He came down with a nasty stomach bug, complete left vocal cord wasn’t working properly and that his swallowing with daily vomiting. Once his system recovered from the illness, and speech would remain impaired for a while after the surgery. “I though, the nausea didn’t stop. didn’t notice it, but people were Derek’s doctor referred him to Derek says the diagnosis was almost telling me my speech was slowa gastroenterologist, and a stomer,” Derek remembers. a relief. There was a name for his ach scope revealed a herniated When Derek’s MRI results problem and a chance of fighting it. hiatus, which is a hole in the came back, he and Art got the stomach valve. “They figured first piece of good news they’d that’s why I was throwing up,” he says. heard in days: the surgeon was confident the tumour could be reBut Derek started getting severe headaches in October, and the moved. Derek’s surgery was scheduled just a few days after the doctors he was seeing didn’t connect the two symptoms. The in- tumour was first discovered. itial thought was that the then 15-year-old was having migraines. The Stollery team sent Derek home for the weekend, and it was However, the migraine medication didn’t work, and in just a his last taste of normal life for several months. All through the couple of weeks, Derek’s list of symptoms soon grew to include weekend, Art and his wife (Derek’s stepmother), Sherry, were dizziness. “All of a sudden he couldn’t walk straight,” recalls conscious of the need to stay strong in front of Derek. “It was realDerek’s father, Art Schenk. “We knew something wasn’t right.” ly rough,” Art says. “Brain surgery’s not an everyday thing, and Derek saw a different doctor on November 28, and this physician you’ve got to be strong for your child. You can’t break down in connected Derek’s headaches and dizziness with the earlier com- front of him because he’s the one who has to go through it.” plaint of nausea. The doctor did a balance test with him and found Derek’s recollection of the pre-surgery weekend is characteristhat Derek had almost no sense of balance. The doctor, whose son tically low-key. He came home from the Hospital and had supper happened to have had a non-cancerous brain tumour before, said with some of his friends, where he told them about his diagnosis a CT scan was needed, and the sooner the better. “When the doc- and his treatment. “I just told them not to worry and I’d probably tor got all serious, I knew there was something going on,” says Art. be fine, but I might have problems afterwards,” he says. “I was just Derek and Art made the 45-minute drive from their Forest- telling them that if I’m a bit different, don’t treat me any differburg home to St. Mary’s Hospital in Camrose for the CT scan. The ently.” The next day, his family threw him a party, inviting outfindings: Derek had a tumour the size of an orange in the back of of-town relatives to wish Derek well. “We just pulled the family his head, right at the bottom of his brain stem. “You don’t even together,” says Art.

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SPORTS-MINDED: Like many teenage boys, sports, especially playing and watching basketball, are among Derek Schenk’s favourite pastimes.

On December 2, Derek went into surgery. The 10-hour oper- we can’t blame him,” Art wrote. “But we encourage him and he ation went well and, for the first few days, so did the recovery. remains strong.” Derek’s tongue was swollen, which impaired his speech, but he The biopsy taken during Derek’s brain surgery revealed the tuwas breathing on his own. He even took a few steps with a walker mour was a form of cancer called ependymoma, which attacks and got out of the intensive care unit. “Everyone was impressed,” the ependymal cells that line the centre of the spinal cord and says Derek. Then his left lung collapsed and he developed pneu- the brain’s ventricles, the fluid-filled cavities in the centre of the monia. Derek was fitted with a breathing tube and he stayed in brain. In adult patients, ependymoma usually occurs in the spine. bed for a week. The location of Derek’s tumour – his brain – was more typical of There were a few more setbacks over the next weeks. Derek’s pediatric patients with the disease. Derek’s next step after heallung collapsed a second time just before he was due to be fitted ing from the surgery was to undergo six weeks of radiation, which with a feeding tube through his stomach so he could get his nu- he started at the end of January. trition more quickly. Then he was In February, Derek’s swalsupposed to have a tracheotomy lowing ability had improved Although his recovery was difficult, surgery to help him breathe and enough for him to have his first Derek says the staff at the Stollery help his lungs heal. Before that drink. He started out swalmade life more bearable. could happen, he got a cold and lowing milk, which was easier needed to put off the surgery, but than water. “They were worried Derek hung on. By Christmas, he wasn’t in the ICU anymore and that anything I swallowed would end up in my lungs and not my he continued to get stronger. stomach,” he explained. “Milk went down slower, so my body had time to react.” And after two months of not being able to have ART HAS A FILE ON HIS COMPUTER WITH ALL OF THE EMAILS food or liquid in his mouth, Derek was ecstatic to be drinking lihe sent to family members throughout Derek’s recovery. The quid again. “When I was able to have milk, it was the happiest updates are interspersed with pictures of Derek and the friends day of my life.” and family who visited during his time in the Hospital. You can Derek was discharged from the Stollery at the end of January. watch his progress throughout the document: from the tired He stayed with Art and Sherry at the Ronald McDonald House, post-surgery smile to his triumphant first steps with a walker. returning to the Stollery and Cross Cancer Institute for appointThe document is a testament to his parents’ love for their son and ments. In total, Art had a room at the Ronald McDonald House a chronicle of the way Derek and his family held each other up for three-and-a-half months. “I was totally impressed with the through the dark days of his recovery. Not every entry is positive. people there,” Art says, describing how Derek was allowed to inOn December 15, Art tells his family about Derek’s lung collaps- vite friends to the House for a birthday party. He was even granting a second time. Even though it was a disappointing setback, ed use of the theatre so he could play video games on a 10-foot Art ends the entry on a high note: “Derek is frustrated, although screen. “It gave him a taste of regular life again.” 16

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DOWNTIME: Derek Schenk spends time with his stepmother Sherry and father Art in their home in Forestburg, top right; father and son take a breather from shooting hoops, bottom right. Although his recovery was difficult, Derek says the staff at the Stollery made life more bearable and often more fun. He speaks particularly fondly of the nurses who took care of him every day. “They were all just really fun and energetic and upbeat. If I was really sad they would try to cheer me up. They told me how special I was and how strong I was,” Derek says, “and it made me feel better.” Named this year’s CMN Champion Child, presented by Walmart, Derek is looking forward to helping other children look to the future. “When kids are going through rough times, they can see a child, who went through something awful, be happy and normal, just living life.” As for Art, he’s proud to see Derek supporting other Stollery kids, and he says Derek’s ability to talk frankly about his illness is just another sign of his strength. As a parent, Art says it’s more difficult for him to talk about, but he’s happy to support the Stollery. “Without them, we wouldn’t have him, point blank,” he says. “If it wasn’t for that outfit, Derek would never have survived.” Though somebody with a serious illness would rarely be described as lucky, Derek feels fortunate to have been able to stay at the Stollery and wants other Stollery kids to know they’re not alone. “Nobody should enjoy being in the hospital, but the Stollery felt like home in a way,” he says. “I felt cared for and loved, and in times of darkness, it’s nice to have awesome care and love. It’s awesome to be happy instead of sad.” It’s that kind of care, the support of his family and friends, plus Derek’s own winning attitude that will help him with his next challenges. Derek’s cancer reappeared in his spine in late summer and, at press time, he was working with his medical team to set up a treatment plan. STOLLERYKIDS.COM

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alumni FILES

Against the Odds Fraternal twin who was not expected to survive looks forward to a bright future despite a lifetime of hospital stays and surgeries

PHOTO: COURTESY BECKY CROWTHER

BY Nadia Moharib

SURVIVOR: Former Champion Child, presented by Walmart, Hanna Crowther, credits a lifetime of Stollery Children’s Hospital visits for the strength she now possesses as a young adult.

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ANNAH CROWTHER IS AN EASY-GOING

young woman and a recent high school graduate with a bright future ahead. It’s hard to believe considering doctors once feared she might not have one at all. “In my heart I knew I was doing the right thing,” her mother, Becky, says of a decision made along with husband, Doug, to continue carrying Hannah despite the doctors’ predictions she might not thrive, if she survived at all. “They couldn’t confirm she was going to be severely disabled – they said it would be mild to severe – so you have hope. We trusted our guts.”

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Her medical team also listened to baby Hannah growing in her mother’s belly. “All of a sudden three or four or five months went by and she was hanging on. I could feel her, her heart was strong,” Becky says. “And her little hands and feet were going.” But while her fraternal twin, Jacob, was doing just fine, the prognosis for Hannah was not so good. Doctors discovered a kiwi-sized bundle of water on the girl’s brain and prepared the soonto-be parents to have a so-called “vanishing twin.” They warned “Twin B” may not survive. But Hannah’s parents had faith their baby might STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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PHOTO: COURTESY BECKY CROWTHER

defy the ominous odds. And they were right. Hannah was born with hydrocephalus. The buildup of cerebrospinal fluid inside the brain also left her with bilateral spastic cerebral palsy, which made her legs stiff and her femur bones turn inward, making walking impossible. By the time she was three months old, Hannah had endured three surgeries to insert a shunt and revisions, and has since had more than 30 surgeries to address various issues. But predictions she might never talk, walk or have a normal life were proven wrong. Time and time again, Hannah cleared hurdles in her way. She didn’t master walking until she was four, but not surprisingly the self-described chatty half of the fraternal twins was talking earlier than most children. For more than six years she had ongoing treatments getting Botox injections and casting to help her relax and straighten her legs. Then, at age 10, she underwent two femoral osteotomies where doctors operated on Hannah’s legs, turning her feet out and putting pins in her feet, thighs and knees. The surgeries were a success, but also meant Hannah had to learn to walk again. And she did. “There are times I think, ‘What if I can’t do this?’ But then I think, ‘What if I tried?’ ” Hannah mused during a recent interview when explaining how she approaches life’s challenges. “I’m not going to say I can do everything, but you better believe I’m going to try.” It should come as little surprise, then, that Hannah’s bravery in the face of so many obstacles saw her named ambassador for the Stollery and CMN as the 2008 Champion Child, presented by Walmart. Today, the same feisty girl who kicked in her mother’s belly is stronger than ever – and she credits her journey for fostering such fortitude. “It sounds conceited but I’m definitely stronger than most kids,” she says. “I don’t let anyone treat me differently.” And, not unlike her parents nearly two decades ago, she has faith. “I’m not a religious person, but you don’t need to be a religious person to have faith,” the teen says. “I have faith in myself, which is pretty rare in teenagers.” Becky says, “We never pitied Hannah,” adding she hopes that built a resilience in her daughter to tackle any challenge. “There would be parents running over to get her if she fell down but our advice was, ‘Just grab something and get up,’ ” Becky explains. “She doesn’t dwell on it ... She is an amazing young girl.” Dr. Keith Aronyk, a pediatric neurosurgeon at the Stollery, agrees. And he is thrilled to have seen Hannah evolve from a struggling newborn into the lovely young woman she is today. “If you battle through, it is worth it,” says the doctor. “She’s determined and always positive. She would never be deterred if she had a goal in mind, right from when she was a little girl. She just does it.” Over the years, Hannah and her family have spent many months at the Stollery Children’s Hospital and they can’t say enough about the care they have received. “We have had all kinds of help since she’s been born. We’ve never even had to ask for a Band-Aid,” Becky says. “I’m so grateful,” Hannah adds. “It is a hospital, but it was also fun.” Now with most of her major medical complications behind her, Hannah is hopeful and free to carve out any future she likes. And as she does, she is almost wistful when she notes how some of her surgical scars are fading. STOLLERYKIDS.COM

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“I like them,” she says. “Scars are like tattoos but with better stories.” But before Hannah dives into her next chapter, she plans to relax. “I’m taking a year off and I’ll probably get a job and hang out with friends,” she says, resigned to the reality she might be getting her driver’s licence, too. “The thought of driving scares me, but mom thinks I should.” As for post-secondary education pursuits, Hannah (who is addicted to the TV series, The Blacklist) hopes to delve into investigative studies. “I’m observant, I’m smart and I would be good at that,” she says. “Other people say that, too.” What has Becky learned from her daughter? “Never give up and never say no – which she says a lot,” the proud mother says with a smirk. “I don’t sweat the small stuff – so, it’s 30 degrees and hot, get over it. Or it’s 40 below or snowing, deal with it. Nobody wants a Debbie Downer and I don’t want my daughter to be one.” She’s far from it. “The whole journey has been pretty great,” Hannah says. “I love life. I have no complaints. None at all.”

LEADING EDGE: The Stollery treats 1,500 children for injuries and/or illnesses affecting the brain or spinal cord through its pediatric neurology program each year. For more on the Neurosurgery Kids Fund benefiting this area, visit neurosurgerykids.com

IN HER OWN WORDS How would you describe yourself? I’m not a pushover; if I don’t want to do it, I don’t do it. I’m very honest – if you don’t want an honest answer, don’t ask me. And I’m supportive. Favourite pastime: Writing stories, although I’m really bad for not finishing them. Favourite food: Pasta. Top three favourite things: Family, friends and writing. Favourite musical artist: Pink. What would you save from a fire? My family and dogs could get out themselves, so I would save my laptop and charger. Words to live by: I know it sounds cheesy, but, ‘Never give up.’ Pet Peeves: Bullies. What would you do if you won $1 million? I would give half to charity and save the rest. Who is your hero? My mom. She is the most incredible person. She’s strong, honest and kind and I love her more than anything. She doesn’t give up.

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Thank you to our donors and participants for raising more than $26,000 for kids at the Stollery Children’s Hospital! We invest your funds in the best people, programs, pediatric equipment and research to keep the Stollery world-class in delivering acute health care to kids who need it most.

THANK YOU TO OUR SPONSORS

The Stollery Children’s Hospital Foundation sincerely thanks RE/MAX agents for their commitment to providing excellence in care at the Stollery Children’s Hospital. RE/MAX agents who join the Miracle Home program voluntarily make a donation for every home sold. In 2015, 950 agents in Edmonton and northern Alberta gave more than $470,000.

PROUDLY SUPPORTING

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Who thinks you’re a superhero? We do. Thanks to everyone who helped save the day and raise more than $928,000 for the Stollery Children’s Hospital Foundation and Alberta Children’s Hospital Foundation. Your generosity will help provide the best care for sick and injured children across Alberta.

Proceeds support:

™ ATB Financial is a trademark of Alberta Treasury Branches. 70212 (04/14)

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Mighty

MIA

PHOTO: KENT RICHARDSON

How one blonde-haired, blue-eyed superhero proves a formidable opponent in the fight against juvenile diabetes

BY Debra Clark

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EET MIA RICHARDSON. SHE’S AN ACTIVE 11-YEAR-

old girl who loves everything from swimming, dancing and longboarding to cooking, playing piano and spending time with her family and friends. Oh, there is one thing that sets this bubbly preteen apart – her pancreas doesn’t produce any insulin, a hormone that enables people to get energy from the food they eat. Without insulin, glucose (sugar) builds up in the blood stream, creating a dangerous and life-threatening situation. What does all this mean? Well, Mia has Type 1 diabetes (T1D), an autoimmune disease. Prior to her diagnosis in 2004 at only 10 months of age, Mia had been sick with everything from strep throat to ear infections. “That last week in September, her breathing had become really laboured and she was very lifeless,” Mia’s mother, Tamia, recalls. “We took her straight to the emergency room … within 30 minutes of arriving they did some bloodwork and that’s when we were told she had diabetes.” Mia was immediately admitted to the Stollery Children’s Hospital because she had also developed diabetic ketoacidosis, a life-threatening complication of the disease that occurs when the body produces high levels of blood acids called ketones. “Mia was in the intensive care unit for four days and the pediatrics unit for four days because her condition was so severe. If she hadn’t gotten medical attention early enough, she could have gone into a coma,” Mia’s father, Kent, says. “It wasn’t until after that one of the nurses told us she wasn’t sure she’d pull through that weekend.” The Richardsons’ lives had changed forever, but while turned upside down, they were grateful to still have their youngest daughter with them. “I think not knowing what was wrong was the worst part. I wasn’t glad it was diabetes but glad we at least knew what we were up against,” Kent says. “We were immediately given a five-day intensive course at the Stollery to teach us how to look after her on our own, and it was comforting to know that help was only a phone call away.” The reality is, diabetes doesn’t take any time off and there is no cure. For Mia, glucose strips, pump sites, needles and insulin are commonplace. And then, there is the counting. Everything from measuring how many grams of food she needs to eat, to how much insulin she needs to take – this Sherwood Park family’s world is filled with numbers. “We test her blood sugars about 10 times a day on average and through the night every couple of hours … she doesn’t wake up, but we need to make sure she doesn’t have an extreme low or high,” Kent explains. Offering a continuous system of insulin delivery, over injections, Mia has been STOLLERYKIDS.COM

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using an insulin pump for the past five years. “Her numbers have been within the normal range or better since she’s been on it,” Tamia says. “It’s a lot of work to manage the diabetes, but it just becomes our normal. We often doubt ourselves or feel incompetent because even though her numbers might be good at a certain moment, it’s something that can change all the time. There are always new challenges. It’s just never easy,” she says. Over the past decade, Mia has been admitted to the Stollery twice due to diabetic complications from having the flu and in two other instances the family was forced to call 911, and countless times Kent and Tamia held their breath waiting for a potentially dangerous situation to resolve. Even though Mia hasn’t been able to do typical preteen things like sleep over at a friend’s house, she doesn’t see herself as different. “She’s grown up with it. Does it get wearing on her? Yes. Has she ever really complained? No,” Tamia says. Kent estimates Mia has endured close to 10,000 needles and more than 35,000 finger pokes so far in her life. “You think of your kids leaving and starting their own lives; for me I have goals for her but feel like I’ll always be attached to her at the hip somewhat,” Tamia says. For now, the Grade 6 student at Glen Allan Elementary School in Sherwood Park has become more independent in recognizing when her blood sugar levels are becoming low and how much insulin she needs. From her appointments every three to six months at the Pediatric Diabetes Education Centre at the Stollery to the wonderful doctors, nurses, dietitians and counsellors, the Richardsons have been overwhelmed with the care and support Mia has received. The family was also able to connect with the Juvenile Diabetes Research Foundation (JDRF) and meet others in similar situations. “Embrace the Stollery because they were a godsend for us on many occasions. I wouldn’t like to think about what it would be like without these two partners in our lives,” Kent says. Kent and Tamia, both teachers, along with Mia’s big sister Maren, 13, formed The Mighty Mias, a united group of family, friends and community partners, along with staff, students and parents from Edmonton’s Bisset School, dedicated to raising diabetes awareness and money to help find a cure. So far, around $150,000 has been collected. “Mia is my hero because she is a real happy kid and finds joy in so many things even though she has to deal with so much,” Tamia says. “Our family is closer because of it.” In true superhero spirit, Mia offers these words to others battling the illness: “It’s easy to give up, but don’t.” F A L L 2 0 1 5 | HEROES

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PHOTOS: COURTESY OF THE DUNCAN FAMILY

GROUNDBREAKER: Dr. Neil Duncan, shown at right with Mike House of the Stollery Children’s Hospital Foundation and in surgery, above, was one of the the first pediatric cardiologists in Alberta and first chair of the Foundation. Centre and below: Family portraits are an annual tradition.

Heart Felt BY Nadia Moharib

Dr. Neil Duncan recalls a lifetime of helping kids get healthy

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HESE DAYS, 90-YEAR-OLD RETIRED PHYSICIAN

Dr. Neil Duncan can joke that, given his brother’s chosen profession – going into law like their father – he was forced to resort to a Plan B and pursue medicine. “My older brother got a job with dad’s office, so I had to do something else,” he scoffs. But given his successful career as a pediatric cardiologist, it is obvious Dr. Duncan wouldn’t have had it any other way. “I was totally happy with my career – I’ve had a lot of people respect me for that but I also worked to get that,” he says during a recent interview at his Edmonton home. “I could hardly wait to get to work every day. I did the best I could on every case. Every kid had a future and I would do my best to get that kid a future.”

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Born in 1925 in Edmonton, Dr. Duncan graduated from the University of Alberta medical school in 1949. In a career that lasted until 1992, the father of five, trained in Canada and the U.S., travelled to northern communities, made house calls and took phone calls from panicked parents at all hours. While he speaks freely about hard work, Dr. Duncan stops well short of bragging. “He doesn’t toot his own horn,” his daughter Deborah Duncan says. “But he was flying to the Northwest Territories and the Arctic treating kids in the ’70s and ’80s.” Dr. Duncan was a major player in his field: one of the first pediatric cardiologists in Alberta, one of the founders of the Stollery Children’s Hospital Foundation and its first chair. After training at children’s hospitals in Toronto and Chicago, Dr. Duncan came back to EdTHANK YOU: A gift from a former patient is among monton keen on bringing his expertise to Alberta. Dr. Duncan’s cherished belongings. He joined the Baker Clinic in 1953 practising general pediatrics. The next year, adult cardiologists at the University of Alberta Hospital, Bob Fraser and Joe Dvorkin, started developing a cardiac grandchildren and four great grandchildren – had five of his own catheterization lab for patients who were candidates for pioneer- at home, too. He and late wife, Eleanor – his partner for more than ing cardiac surgeon Dr. John Callaghan. A number of those patients 65 years – built a great life that included packing their children were children and newborns, and the two physicians were looking up for summer road trips across Canada or cherished time at the to develop capabilities in caring for them. Dr. Duncan joined them, family cabin. When he did talk about work, it was about the people he met. beginning his career in pediatric cardiology. “He would talk about the good days but he seldom talked about In 1957, at an annual salary of $5,000, he took a part-time appointment in the department of pediatrics at the University of the bad days,” his youngest daughter, Deborah, recalls. “As a Alberta where he taught pediatric cardiology to medical students, pediatrician you always have two patients: the child and the parpost-graduates and residents. Working with children was always ent. He never talked about his cases but the people he treated. a pleasure. “They are better than adults ... their life is all good,” Through his life he was always extremely hard-working, passionate ... he kind of jumped into things very wholly and never did he says. “Every kid thinks tomorrow is going to be a good day and they something halfway – the house, the yard, the cottage – he barely are going to get up and have breakfast and mom’s going to be there. ever relaxed; he was always working on something.” Dr. Duncan’s love of children made his work easy. “Some kids Adults get up and say ‘Oh great, I’ve got to go to work.’ Children acted up, but I never met a kid I didn’t like,” he says. “I guess I were always good patients.” Dr. Duncan left the Baker Clinic in 1983 to focus full time liked kids, spending time with kids. Kids are easy. Kids are fun. If on building the department of pediatric cardiology at the Univer- something is wrong with the kid, you fix them,” he adds. “All you have to do is care a little.” sity Hospital. While Dr. Duncan is an inspiration He is “proud to have seen the de“No one wanted a children’s for those who came after him, his partment climb from such humble hospital. It aggravated me,” Dr. pursuit of medicine was fuelled by beginnings to its present astounding Duncan recalls. “But it’s a real gift none other than his own childhood position,” but it wasn’t smooth sailto enjoy other people’s children.” physician – a man who would later ing. Instead, it was frustrating to try become his idol in medical school. to develop pediatrics in the way he and others envisioned – given there was pushback. “I wanted to “Dr. [Douglas] Leitch laughed all the time, he had a happy disposget pediatric cardiology elevated to the level it should be,” he says. ition and a way of coming in and going out and you never knew he “No one wanted a children’s hospital. It aggravated me. It was was there,” Dr. Duncan adds. “He was a good pediatrician. I wantjust disinterest by doctors who were treating adult patients. No one ed to be like Dr. Leitch.” But even before Dr. Leitch, “I was always going to be a doctor,” likes other people’s children,” he says with a laugh. “But it’s a real he says. “In high school they called me ‘Doc.’ ” gift to enjoy other people’s children.” And while many heap accolades on Dr. Duncan for his contriAnd one of his gifts is the legacy of his work, which lives on decades after his retirement. Pediatric neurosurgeon Dr. Kei- butions to pediatrics, he says, “The thing I’m most proud of is my th Aronyk says Dr. Duncan is among a group of “pioneers for family.” One of his sons even grew up to become a pediatric cardiac pediatric sub-specialties. He was a major inspiration to us and surgeon, with two children becoming nurses, one a teacher and he paved the way,” Dr. Aronyk says. “He is the most compas- one a lawyer. They all trained to be professionals in the service of sionate and calm and humble person and he is highly capable – others. “In our house, that’s what you did. Eleanor and I raised five he taught a whole generation how to listen to heart sounds at the kids and they are all good kids. I think that is probably the most important thing I ever did. I found a good wife, we had a lot of fun University of Alberta Hospital.” Busy with children at work, Dr. Duncan – who now has 14 and had five great kids and I’m still alive.” STOLLERYKIDS.COM

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Community

CHAMPIONS Supporting the Stollery has long been a part of team culture for the Edmonton Eskimos Football Club, from impromptu Hospital visits to fundraising

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HE MEMBERS OF THE EDMONTON ESKIMOS FOOTBALL ers are willing to do that, and they look forward to it.” Allan adds, Club are heroes to their many fans: not only on the playing “We think that what we do is important, we think that what we field, but also in their giving back to the community that do is making a contribution, and we’re doing it not expecting a supports them. single piece of anything in return other than the good feelings we One of the biggest, most heartfelt ways the Eskimos give back is get by going there.” in their ongoing support of the Stollery Children’s Hospital FounDepending on their availability and the team schedule, it dation, dating back to the Foundation’s establishment and even could be anywhere from one player to half a dozen who visbefore that, to its predecessor, the Northern Alberta Children’s it the children at any one time. The Eskimos contact the StolHospital Foundation. lery, so that staff can let the kids and their families know “As long as there have been kids who are sick, there have been when they’ll be coming. While there are some children the sports teams that are willing to Eskimos are not able to visit – do whatever they can. And in such as youngsters who are in Eskimos team members visit the Edmonton we’ve been involved, isolation or in the ICU – those Stollery during the football season in particular at the Stollery, who are able gather at The Beach as well as in the off-season, typically for decades,” says Allan Watt, or in the Teen Room within the Edmonton Eskimos viceStollery, they meet the Eskimos making anywhere from 15 to 20 president, marketing and complayers, who come in for a couple visits each year. munications. “It’s part of the of hours to spend time with culture of what we do.” everyone: playing video games, There is a long history of Eskimos players getting involved with table hockey and other games; doing arts and crafts; signing autothe Stollery Children’s Hospital Foundation that also includes graphs and posing for photos. “It’s always fun to watch the guys many of the Eskimos’ most respected alumni players, a tradition playing PlayStation with the kids and goofing around with them,” that continues right through to today. says the Eskimos’ community relations co-ordinator, Nick PelleEskimos team members visit the Stollery during the football tier. “When it’s arts and crafts time, the guys jump right in, paintseason as well as in the off-season, typically making anywhere ing the Edmonton Eskimos logo. There are a lot of different ways to from 15 to 20 visits each year. A few examples from recent years: in interact with the kids.” 2013, Eskimos players visited the Stollery 26 times, in 2014, 23 times Players who have never been to the Stollery before are deeply afand in 2015, they’ve made a dozen visits so far. fected by the visits. “The guys leave there with a completely differ“And all that takes place without any fanfare,” Allan says. “This ent understanding of what the Stollery is, and with a new outlook is when they’re at home playing home games, and our commun- on what other people are going through,” says Nick. “Just the two ity relations co-ordinator organizes the players after practice, so hours we spend at the Stollery does make a difference in people’s they’re going over to the Stollery and visiting with the kids and lives. We give them an opportunity to smile, forget about their their families. It could be a player that perhaps nobody would troubles and what they’re going through for an hour or two and know, or it could be the starting quarterback. Any and all play- just let them be kids.” 24

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PHOTO: COURTESY EDMONTON ESKIMOS FOOTBALL CLUB

BY Jacqueline Louie


Alberta provides a place for the families to stay. Through the Meals that Mend program, when families return from visiting their child in hospital, they’re treated to a home-cooked meal, prepared on site at Ronald McDonald House by a group of Eskimos players, staff, cheer team members and executives. “It’s great. The families are very happy, and the staff at Ronald McDonald House are ecstatic we’re able to do something like this,” Nick says. Throughout the year, the Eskimos take part in many other events and functions, supporting other non-profit organizations that help children with health issues, many of whom are Stollery kids. “We are a community-owned professional football team, and in our opinion, that means we not only have to be functioning as an Edmonton community-owned team. We also have to go out into the community,” Allan says. “These things we do at the Stollery Hospital are very important because there is no better place to reach out and touch people who need our support. The Edmonton football team gets our support from the community, so we should be supporting others in the community – and we do.” The Edmonton Eskimos have been long-standing partners of the Stollery Children’s Hospital Foundation, making a difference in young people’s lives for many, many years. “They are an Edmonton community team, and they show that in everything they do, demonstrating their passion and their care for children’s health,” says Martin Schuldhaus, Stollery Children’s Hospital Foundation director of marketing and communications. “There are a lot of really great opportunities for them to give back and help out, and they do that all the time. It’s pretty wonderful.”

PHOTO: COURTESY EDMONTON ESKIMOS FOOTBALL CLUB

TEAM PLAYER: Edmonton Eskimos quarterback Mike Reilly takes some time after practice recently to visit with Stollery kid Alex Panas.

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These visits are well received by the young patients, their families and Stollery staff alike. “The sense we get is that everyone is very appreciative of our time and us doing it, especially when we’re getting the higher profile players out,” Nick says. “Every Eskimos player is expected to always give back to the community, and the Stollery is a number one thing for sure. When you see the kids’ faces light up, there are no words to explain what that means – to the parents and to the Eskimos organization as well.” In addition to their Hospital visits, the Eskimos help the Stollery Children’s Hospital Foundation in a variety of other ways. At the annual Hair Massacure, in support of the Stollery Children’s Hospital and Make-A-Wish Foundation, Northern Alberta, Eskimos players come out to shave heads, sign autographs and raise the profile of this event, which raises money to support kids with life-threatening illnesses. Hair Massacure is the world’s largest mass head shave, held in February each year at West Edmonton Mall. In another initiative, the Eskimos are event partners with the Stollery Children’s Hospital Foundation and Edmonton Co-op, offering a line-up of Co-op – Eskimos Game Day Approved food and gear. A portion of the proceeds from the sale of these approved products goes to support the Stollery Children’s Hospital Foundation. For more on Co-op’s Game Day Approved goods and how they benefit the Stollery see the story on page 34. The Edmonton Eskimos also work closely with Ronald McDonald Charities Northern Alberta through its Meals that Mend program, cooking meals for out-of-town families whose children are patients at the Stollery. Nearly 50 per cent of the Hospital’s patients come from out of town – from across Western Canada and the Northwest Territories – and Ronald McDonald Charities Northern C

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one TO WATCH

RESEARCHING the BY Cory Schachtel

WAY

A doctor’s life’s work pays off, saving lives and changing how we view pediatric cancer

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HERE IS A LAB, DEEP WITHIN THE UNIVERSITY OF

Alberta’s Medical Sciences Building, where important research on the fundamental nature of infant and child cancer takes place. In the middle of the lab sits a small office, where stacks of paper cover the desk and shelves, but not a single page is askew. It’s cluttered, but in the most organized way possible, leaving the cramped yet focused space with just enough room to work. The office belongs to Dr. David Eisenstat, whose business card is just as busy as his workspace. One side shows his U of A titles, the other his roles with the Kids with Cancer Society. Neither side covers it all. At 54, he has the experience of someone a decade older and the energy of an eager undergrad. STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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PHOTOS: ANTHONY HOULE

Born in Montreal to a lawyer father and a teacher-librarian mother, to divide and spread. But evidence eventually showed Dr. Eisenthe Eisenstats left Quebec and relocated to Kingston and then Toron- stat could be right. “To be fair, my idea wasn’t wholly original,” he to, where he grew up and went to medical school. His grandparents clarifies. “Others were beginning to probe the concepts of specific each had a university degree, which was the expectation for the rest tumour types.” The biggest help has been the ability to gene-sequence all mutaof the family. He’s the oldest sibling to a physician brother and an investment banker sister, and among his extended family, “There are tions in childhood cancers and compare them to mutations in adult cancers. This creates the “mutational landscape of cancer” – one end lots of PhDs,” says Dr. Eisenstat. Dr. Eisenstat went into medicine for two reasons, both of which has just a single or a few key mutations, the other has thousands, and remain front of mind today. “My interests were brain tumours and the majority of pediatric cancers appear at the low end. “The other thing we’ve learned from sequenbrain malformations,” he says. cing is some of those mutations in “Typically, that would mean I’d childhood cancers are of genes become a pediatric neurosurgeon, “Before I could even formulate the that are important for normal deso I started as a surgical intern. But question,” Dr. Eisenstat recalls, “I Dr. Eisenstat says. I soon realized that my hands were wanted to know: why should children velopment,” “It has almost validated someone not meant to be inside anyone’s get cancer?” like me, over here working on head.” He switched to pathology, but that left a bad taste in his normal development. Genes I’ve mouth – literally. “I gave up eating meat after my year in pathology. I been studying for over 10 years may have relevance to some of the just lost my taste for it,” he says. “You know you’re not a pathologist cancers I’ve been treating.” The progress is slow but rewarding, and Dr. Eisenstat is quick when you don’t want to dig into a steak after an autopsy.” But his interest in tumours and malformations stayed strong, so he to acknowledge it doesn’t happen without donations. The Stoldecided that by becoming a pediatric oncologist he could deal with lery Children’s Hospital Foundation through the Women and tumours. And with ambition that’s impressive even for a doctor, he Children’s Health Research Institute provided startup funding for figured that with enough training he could eventually have his own his research lab and support for his research when he was first relab to study brain development. “And here I am still doing that, all cruited to the U of A in 2011 and continues to support his research. these years later,” he says. “I went from surgery to pathology to pedi- Dr. Eisenstat also cites funding from the annual Hair Massacure atrics in three sequential years, which was very lucky.” event as particularly beneficial. The one certainty throughout his 15 years of training was that he “Let’s say I had a DNA sequencer in my lab, and it breaks,” he was always going to end up in pediatrics. Dr. Eisenstat recalls that, muses. “Where am I going to obtain the funds to repair or replace this “Back then, before I could even formulate the question, I wanted to equipment? That’s not a high priority for a national funding agency. know: why should children get cancer? They don’t smoke or drink So the local philanthropic organizations are crucial to maintaining or have bad habits, so why does a two-month-old get a tumour?” our labs.” He couldn’t formulate the answer, but his instincts told him that Pointing over a perfectly stacked pile of papers to pictures of his cancer in children was a disorder of development, not due to the four “very photogenic” children, Dr. Eisenstat reflects on his career environment. so far. “Do I live the work-life balance? No,” he says bluntly. “But to It was a radical idea at the time, since the leading theory revolved see that the link between cancer and development isn’t a half-baked around the idea that childhood cancer was “stochastic,” meaning idea – I find that very gratifying, and hope to continue working on there just happened to be an abnormal cell division that continued that the rest of my career.”

IN THE GENES:Pediatric oncologist Dr. David Eisenstat decided to follow his career path because he wanted to find out why children get tumours. He is researching cancer in children as a development disorder.

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Buy our new Charity Bear today! Available November 23 at:

I This year’s Charity Bear is named after our 2014/15 Champion Child, presented by Walmart, Ben Woodlock.

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WHY I donate

From the Heart

How family members of a young boy with a fatal congenital defect were inspired to found a charity in his honour BY Jacqueline Louie

huge impact on others. And his legacy continues today, helping children with cardiac disease live longer, fuller lives. Born in 1999 with a rare form of congenital heart disease, Evan “was just an awesome little guy, so special. Everybody loved him. He was just a little sweetie,” says his maternal grandmother, Charlene Jenkins. She is the president of the Evan Ty Jenkins Pediatric Research Foundation, operating as Treasure Life, a nonprofit organization based in Beaumont. Through its partnership with the Stollery Children’s Hospital Foundation, Treasure Life funds stateof-the-art diagnostic equipment and programs for young heart patients at the Stollery Children’s Hospital in Edmonton. When Evan was diagnosed at birth with hypoplastic left heart syndrome, “We knew he was going to have a tough time,” recalls Charlene, whose first daughter, Kristi, died from a similar condition in 1977. “He had a very complex condition with a number of different heart conditions that would have made it very difficult for him to continue without some type of surgical intervention.” After three years of monitoring by physicians, Evan had two open heart surgeries, which prolonged his life. After the second, he was placed on a list for a heart transplant but “as far as time goes, we didn’t have enough time,” Charlene says. Evan didn’t want to be thought of as different. When a doctor introduced Evan to medical students by saying, “This is Evan. His heart is on the wrong side of his body,” Evan’s grandfather Rick Jenkins said, “No, his heart is on the right side of his body.” “Evan went through all the procedures and medical challenges with such courage and was just such an inspiration to everyone,” Charlene recalls. He was a charmer. He knew all his doctors. He was his own advocate for his health care, she notes. “Evan was just like any other little boy. He might have taken more medicine but he still went to school and had his buddies like everybody else. He tried every sport the other kids were doing – T-ball, soccer and more.” After his passing, Evan’s family was determined to help others while keeping his memory alive.“Those types of tragedies bring you together to really reflect on what happened,” Charlene says. “You can either be sad and put it away, or you can put it into something positive. We wanted to be part of cutting-edge technologies that really help kids with cardiac conditions, and we wanted to make sure the programs that we already endorsed stayed funded. Evan’s grandparents – Charlene and Rick Jenkins, and Judy Chapman and Bill McLaughlin – together with Evan’s mother, Shauna – established Treasure Life, to “treasure cardiac children and support their journey through research, education and stroke prevention.” Overseen by a dedicated seven-member volunteer board, Treasure Life now extends far beyond Evan’s family. With the help of its donors and sponsors, Treasure Life is im-

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PHOTO: COURTESY TREASURE LIFE

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N HIS SEVEN YEARS OF LIFE, EVAN TY JENKINS HAD A

pacting the lives of children and their families; since inception it has given approximately $300,000 to the Stollery Children’s Hospital Foundation. And the need is great. According to the Heart and Stroke Foundation of Canada, one out of every 100 children is born with some form of heart defect, with half of those affected children requiring surgery to survive. Treasure Life recently made an $80,000 donation to purchase a portable echocardiogram for use at outreach clinics across Alberta. This advanced diagnostic technology allows cardiologists to look inside the heart using full-colour 4-D imaging and make an instant diagnosis. “It’s brand new cutting-edge technology that makes diagnosis so much easier. We are really proud of that donation,” Charlene says. Treasure Life has also pledged $20,000 annually toward research and the purchase of a variety of monitoring tools, including oximeters, to measure blood oxygen levels; a portable machine to measure blood thickness; and stethoscopes – so that children can return home sooner from hospital. “We want to fund this equipment and get these kids home, which is where they want to be,” Charlene says. Additionally, Treasure Life has given $18,000 to Make-A-Wish Northern Alberta to send cardiac children on the trip of their dreams. Evan’s legacy also encompasses the Treasure Bead Program, an ongoing program at the Stollery Children’s Hospital. Youngsters receiving treatment at the Stollery receive one bead for each medical procedure they undergo, and the bead is placed on a cord that becomes their “treasure chain.” “These kids are proud of those chains – it’s their journey.” Treasure Life raises money for the Stollery Children’s Hospital Foundation through fundraising events that include the annual Treasure Life Golf Classic, an annual skate-a-thon called Skate for Cardiac Kids, a casino and a variety of other events and initiatives. “We are inspired by our ability to be able to fund innovative technologies through this valuable partnership with the Stollery. Our mission fits perfectly with their long-term objectives to pursue excellence in children’s health care,” Charlene says. F A L L 2 0 1 5 | HEROES

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Healing the

HURT Dr. Samina Ali pursues every option to reduce pain for her young patients at Stollery’s emergency department

PHOTO: BUFFY GOODMAN

BY Shelley Newman

PAIN RELIEVER: Dr. Samina Ali splits her time between working in a clinical environment, research and an administrative role, all focused on studying and relieving children’s pain.

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MEET THE specialist

PHOTO: BUFFY GOODMAN

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AIN AND TEARS. ILLNESS AND WORRY. WHEN A CHILD progress moving forward. And her caring approach at the Stollery needs emergency care, it can be stressful for everyone provides the on-site support that’s needed in the moment. “It involved. But thanks to the work of Dr. Samina Ali and can be so distressing for patients and their parents,” says Dr. Ali, the emergency department team at the Stollery Chil- who has three children herself. “I always let parents know that, dren’s Hospital, pain and fear are being reduced, wherever and even if there are tough things that need to happen, my goal is to whenever possible. make it as easy as possible for their child.” “While seeing patients in the emergency department, I came to Part of making things easy involves working with parents who, realize that essentially all of them had some component of pain, Dr. Ali says, “provide far more comfort to their children than I which was often accompanied by anxiety,” says Dr. Ali, pediatric ever could.” To that end, Stollery emergency staff work to incoremergency medicine physician and assistant dean of profession- porate parental comforting techniques as much as they can. “We alism for the faculty of medicine and dentistry at the University of try to accommodate ‘kangaroo care’ whenever possible, where a Alberta. “I started by treating one patient at a time, and I continue parent holds the child close to their chest,” Dr. Ali explains. “A lot to do that, but I realized that if I focused on researching the area of prep work can happen when a parent is cuddling their child.” and changing policy, I could effect even more change.” Sucrose, or sugar water, is another simple pain management This realization led Dr. Ali to reconfigure how she dedicates her option for infants under one month old, and Dr. Ali says putting time. When she started in the Stollery’s emergency department two millilitres onto a child’s tongue minutes before a procedback in 2001, it was her full-time job to see patients. Now, she ure can induce a biochemical response that can take away up splits her time between working in a clinical environment, hold- to 20 per cent of the pain related to a medical procedure. “It’s ing an administrative position and not perfect but it can provide some conducting research. comfort in almost all cases,” she Part of managing pain involves “Doctors affiliated with the Unisays, “and it’s such an inexpensive, versity of Alberta conduct research proven technique.” parents, who can provide more in a variety of settings,” she exPain management begins in the comfort to their children than plains. “In my case, I’m a clinical triage area at the Stollery emermedical staff can. researcher, which means working gency department, where protocol directly with patients or practiallows triage nurses to give acetationers on different areas of need.” For Dr. Ali, who may be con- minophen/ibuprofen for pain or apply a freezing gel to cuts ducting several different research projects at any given time, whenever possible. “While a child is waiting, they don’t have to everything she does connects directly with her “first love” of suffer in pain,” Dr. Ali explains. “This helps them and, from my helping pediatric patients in an emergency setting. perspective, when their pain is diminished, I can then do proper “We spent several years doing an environmental scan, trying exams when I see them.” to determine what people actually want to learn about addressFor patients that may need surgery, oral medications aren’t ing children’s pain,” she says. “The topic of administering pain given during triage. Dr. Ali notes that IV pain medication may be medications, especially for significant injuries, was a common given and the Stollery is starting to pursue intranasal pain mediconcern, so that’s one area we’ve honed in on.” cation spray as an option, “but we’re waiting for more research This summer, for example, Dr. Ali and her research team com- data before we incorporate this fully into our protocols.” pleted a multi-centre study called the OUCH study (a rough acroThis connection between research and clinical practice connym for “oral analgesic utilization for children”) that assessed tinues to be a passion for Dr. Ali as she searches for ways to help whether patients responded better to ibuprofen, oral morphine reduce pain for pediatric emergency patients. “There are so many or a combination of the two for reducing moderate to severe pain. different techniques that can help reduce pain, from intuitive “Dr. Sylvie Le May from the University of Montreal and I were care-giving methods to clinically proven medication options, co-leads on this project, which was quite large and involved 500 all based on scientific studies,” she says. “By combining these, emergency pediatric patients,” she says. “We’ve begun to analyze I hope to reduce the severity, frequency and duration of pain for the data, and within six to 12 months, we hope to publish the full pediatric emergency patients – that’s the ultimate goal.” results. This should provide meaningful answers for clinicians.” Dr. Ali’s research is supported by the Stollery Children’s HospiWhen it comes to managing children’s pain in an emergency tal Foundation through the expert research resources offered by setting, the research Dr. Ali conducts provides the baseline for the Women and Children’s Health Research Institute. STOLLERYKIDS.COM

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Brotherly Love Teen philanthropist gets her inspiration to fundraise and be a mentor from her younger sibling

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HEN KARLEEN RUTTER WAS THREE YEARS OLD,

her new baby brother Jed was born with a genetic syndrome called 22q11 Deletion Syndrome. He spent just short of a year in the Stollery Children’s Hospital – with much of that time in the pediatric intensive care unit – being treated for all kinds of complications. Since then Jed, who is now 13, has had multiple surgeries on his bowels, heart, trachea and stomach. He developed and suffered from chronic lung disease as an infant, continues to visit several clinics at the Stollery on a regular basis and undergoes two day surgeries a year. “It was a very scary, difficult time for our family, but Jed’s positive spirit and determination was our driving force,” says 32

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Karen Calhoun, Jed and Karleen’s mother. And while Jed’s health problems are still present, she insists that none of this slows him down – he has just entered junior high. “He is honestly the happiest person we know.” In the face of immense stress in their lives, Karleen and Jed have both managed to radiate a positive, inspiring attitude. But it’s Karleen, now in Grade 11 and a competitive ski racer, who has taken Jed’s time at the Stollery most to heart. Through hard work and commitment to advocacy and fundraising, she now sits on the Foundation’s Youth Ambassador Committee for the second year in a row. She works with other young people in the city to raise awareness, speak at events and encourage donations of both time and money.

PHOTOS: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

BY Lyndsie Bourgon

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

2015-10-27 8:21 AM


PHOTO: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

youth PHILANTHROPY

“We share stories about the Hospital,” says 16-year-old Karleen, from her home in Edmonton. Each year, these youth are expected to raise a minimum amount of money for the Hospital, as well as volunteer a few hours within their community. The way they accomplish these requirements is up to them as a team. “It’s important to share with our age group because we’re all kids,” says Karleen. “Sometimes it’s harder to connect to people our own age; usually adults listen a bit more than kids do.” Karleen brings a unique point of view to her work on the committee – that of a sibling. “It has affected her deeply and changed her as a person,” says Karen, noting that many of Karleen’s early memories are from the Hospital, where they spent holidays like Christmas and Valentine’s Day. “I believe she values life more TALENTED TEEN: Grade 11 student Karleen Rutter gets than most and feels strongly that she needs to be involved in givher drive to give back to the Stollery from her little brother, ing back to the community and to the world in some way.” Jed, who’s been in and out of the pediatric intensive care “I try to share my story about Jed, where he came from being unit due to a rare genetic syndrome. really sick as a kid, and me having to spend a lot of time in the Hospital with him ... It can be pretty scary having a brother in PICU,” Karleen says. She remembers vividly how the team of little things like specific tiles on the walls of the Hospital hallmedical professionals at the Stollery worked to make her feel at way.” What Karleen enjoys most about being in this group is that home in the halls of the Hospital. “When I look back I just see how it brings together a group of people with varied backgrounds. “I much of a community they created for me,” she says. “The nurses really like how it’s people who are ex-patients, or siblings, or encouraged me to spend time with Jed, they brought me toys and people with friends in the Hospital and from all different areas and perspectives,” she says. “They want to make a difference and they made it a home away from home. “There are kids in the Stollery and their siblings are in there they’re not just saying ideas; they’re actually thinking about how to make them happen.” dealing with what I went through, But Karleen has also taken and when I look at where Jed Karleen brings a unique point of on another cause, thanks to is now and how successful and view to her work on the committee – her brother. Jed also has a dehappy he is as a person, I know that of a sibling. velopmental disability, and that’s all because of the Stollery. last year Karleen started a perAnd that really motivates me to sonal campaign to terminate the use of the “R” word. Growing want to bring that to siblings and patients in the future.” Karleen remembers certain times when the nurses made her up and hearing people use it really impacted me because I have feel like she was a part of her brother’s care and an important part a personal connection to someone,” she says. She has spoken of the team. After Jed had open-heart surgery, Karleen had been at a youth leadership conference about this topic, and hopes to asked to wait in the waiting room instead of going in to visit her develop a more structured presentation through school and the brother. But a nurse soon took her by the hand into the room, community. “Not everyone knows someone who has been at the answering her questions about the equipment that helped Jed Stollery, but everyone has heard the ‘R’ word,” she says, referring breathe and gave him medicine. “Then I felt more comfortable to the term “retard.” “A lot of people use it, too, and if you don’t and I hopped up on the bed with him,” she says. “If it wasn’t for have a connection with someone with a developmental delay, you those nurses, doctors and surgeons being so supportive and cre- don’t know what impacts it can have. When I tell my story, people ating that community, I wouldn’t have been able to be there. I are kind of surprised because many are guilty of using the word think it’s important that continues, and that people know it’s not and they don’t know how those words have impacted me.” just a hospital – it’s a community for siblings and patients.” What keeps her going, with all her responsibilities, is watching As she got older, Karleen began advocating for the Stollery her brother grow up. “He has become an awesome person, and through fundraising initiatives. She has shared her story and the quality of life he is living now is all the work of the Stollery,” spoken at Foundation events like Corus Radiothon and Snow- she says. flake Gala in 2011, when Jed was named a CMN Champion Child, It’s been 13 years since Jed was first at the Stollery, and that presented by Walmart. When she was offered a position on the time has given Karleen an opportunity to reflect back and think youth committee, she considered the benefits of joining: “I saw about that time in her life. “At the beginning, I was just receiving what they were doing and I was doing that by myself. I thought it the goodness of the Stollery. We were having everything happen would be easier to bring awareness with a group of people.” to us, but now I’m in a position where I can give back and let the That has also meant visiting the Hospital for meetings and ex- Stollery receive something from our family in return. Before, we periencing a rush of memories. “It shows me how deeply this were helpless because we were patients who couldn’t do anyhas affected her,” says Karen, of her daughter. “She remembers thing. But now we can give back.” STOLLERYKIDS.COM

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corporate HERO PLAY BALL: Check out our Game Day Approved video of Mike Reilly and Stollery kid Alex Panas at stollerykids.com

PHOTOS: COURTESY FEDERATED COOPERATIVES LIMITED

PHOTO: ANTHONY HOULE

GAME FACE: Co-op has a three-year agreement with certain CFL teams and a five-year commitment with their corporate gifts.

Stamp of Approval BY Sydnee Bryant

Imagine being able to help Stollery kids just by buying a bag of chips. Thanks to Co-op’s Game Day Approved program, your purchase can make a difference

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HAT DO THE EDMONTON ESKIMOS, CO-OP FOOD

stores and the Stollery Children’s Hospital Foundation have in common? More than you may realize. Federated Co-op’s Game Day Approved program brings the three entities together to sell co-branded products in local Co-op stores. The proceeds then go towards funding priority projects at the Stollery Children’s Hospital. In fact, Co-op has been an active partner with children’s hospitals in Western Canada since 2010. Its involvement began in Saskatchewan, when the overwhelming popularity of a special cereal led to the company’s first donation to a children’s hospital foundation. In 2010, Jim Hopson, former CEO of the Saskatchewan Roughriders, and Federated Co-operatives Limited (FCL) CEO Scott Banda were discussing how to celebrate the 100th anniversary of the Roughriders, says Vic Huard, executive vice-president strategy at FCL. 34

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“That conversation led to the creation of what is still, to the best of my knowledge, the most successful private label cereal in the history of Canadian retail,” says Vic. “At that time, a young man named Andy Fantuz was a receiver with the Saskatchewan Roughriders. We did a cereal with him on the box, and 90,000 units of that cereal sold out in about 72 hours, which is still a record in Canada.” In agreement with the Roughriders and Andy Fantuz, Co-op decided the proceeds from the sale of the cereal would go to the Children’s Hospital Foundation of Saskatchewan. That gift was the beginning of Co-op’s relationship with children’s hospitals. In 2013, the company committed to a $5-million corporate gift over five years to children’s hospital foundations in Western Canada. The money is split between five hospital foundations, including the Stollery Children’s Hospital Foundation, which will receive $825,000 over the five years. STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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PHOTO: ANTHONY HOULE PHOTOS: COURTESY FEDERATED COOPERATIVES LIMITED

local athletes. CFL players spend more time in the community, as far as I can tell, then any other sports league in North America. They are out at events all the time. They give back to the community in so many ways. It was such a natural fit. It makes perfect sense to us. And, the cause resonates with us.” Co-op has three-year agreements with certain CFL teams and a five-year commitment with their corporate gift. “For us, it just made sense to go a little longer term [with the corporate gift], to give organizations like the Stollery a little more certainty, so they could count on a certain amount of money over the course of five years,” says Vic. “Will we continue the Game Day Approved program forever? To be totally honest, we don’t know. Like all these kinds of programs, you evaluate on a yearly basis.” The partnership between Co-op and the CFL teams is truly unique and involves a big commitment from everyone involved. “I’ve never been involved in a partnership where all the partners – from the players on the teams to the Co-ops – and The popularity of Fantuz Flakes led Co-op and the Saskatchewan fans and consumers are more invested in a program than they Roughriders to realize there was an appetite for co-branded prod- are in this one. It’s pretty cool,” says Vic. “People need to underucts. “We decided while we were doing the $1 million a year over stand that you can support your team by showing your colours, five years, we wanted to expand but by doing that, you’re also the Game Day Approved prosupporting the children’s hos“I’ve never been involved in a gram with the four CFL teams we pital in your community and are partnered with,” says Vic. that makes a huge difference in partnership where all the partners – In 2013, the Edmonton Espeople’s lives. We get caught up from the players on the teams to the kimos became involved with the the excitement of the playCo-ops – and fans and consumers are in Game Day Approved program. ers’ lives and we have to step more invested in a program than they back and remind ourselves what “It started out small, but we are in this one,” says Vic Huard. really ramped it up this year,” it’s really about, and it’s about adds Vic. This year, Edmonton the kids.” Eskimos quarterback Mike Reilly is featured on a bag of chips sold at Co-op stores in the Edmonton region. The proceeds from the sale of every bag of Mike’s Gridiron Garlic and Parmesan Chips go to the Stollery Children’s Hospital Foundation. Last year, the Stollery received $19,000 from the sales of Edmonton Eskimos co-branded Co-op products. “We were impressed with the Co-op Game Day Approved product line launched last year, and the next product evolution for the 2015 season looks even better,” says Len Rhodes, president and CEO of the Edmonton Eskimo Football Club. “I love the fact that our fans can shop for Eskimos products at their local Co-op store knowing a portion of the proceeds will benefit the Stollery.” “Len Rhodes is an outstanding individual,” says Vic. “For him, Presented one of the things that excited him the most was that the money by: would be going to the children’s hospitals.” The CEOs of the other CFL teams were equally enthusiastic about the cause, says Special thank you to the founding sponsors Vic. “We had a bottom line, and that was that the recipient of of the 10th Annual Spencer Berezowski Memorial the money would be children’s hospitals. We said that that was Golf Tournament for supporting kids at the not up for negotiation. And, in every single city, every team said, Stollery Children’s Hospital! ‘Why would we negotiate? It’s a great cause,’ ” says Vic. Supporting children’s hospitals was an obvious choice for both Landmark Group of Builders Action Express & Hotshot Co-op and the CFL. “We have the starting quarterback for all four Plain N’ Simple Catering Consolidated Gypsum Supply Ltd. teams featured on their own flavour of chips for each city and Premier Fire & Flood Factory Direct Blinds ultimately each children’s hospital,” explains Vic. “All of the Restoration Inc. Industrial Radiography quarterbacks are fantastic to work with. They are a stand-up Prime Fasteners Ltd. Supplies and Services Inc. group, no question about it. River Ridge Golf Course Grant Miller ServiceMaster of Roofmart Edmonton “For us, it was kind of a slam dunk. There’s an alignment to Toni Betty RE/MAX JSJ Bookkeeping who we are and how we see ourselves fitting into communities. ZKO Oilfield Industries Inc. Kodiak Inspection Services Our employees have told us very clearly that they care about

THE SPENCER BEREZOWSKI MEMORIAL GOLF TOURNAMENT

this,” says Vic. “We love working with the children’s hospitals. The Stollery has been an outstanding partner. The CFL players are STOLLERYKIDS.COM

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volunteer HERO

BY Michelle Falk

Serving the Community One Stollery board trustee is proud to be part of a tradition of philanthropy EACH PERSON WHO DONATES TIME OR DOLLARS TO THE STOLLERY

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move towards excellence,” he says. His time in the Hospital with Jack also emphasized the importance of the work being done at the Stollery. Richard is enthusiastic about the Stollery’s potential. “It’s not only continuing the tradition of supporting an important charity with other great trustees and the great staff at the Foundation; it’s about thanking donors, thanking the healthcare workers, and building for the future because the needs of the community are changing,” he says. Edmonton has long been a destination for people to migrate, but this year Alberta broke the record on children born in the province. The population is growing rapidly, and the demands on the Stollery are shifting. Richard emphasizes it is more important than ever that people get involved and support the work being done at the Stollery. “To have a world-class community, you need to have a world-class hospital for children,” he says. Considering the contributions he has made as a donor and volunteer, it’s easy to see that his own impact on the Stollery will be appreciated by generations to come. STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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PHOTO: MATHEW MARTIN

TOP NOTCH: Richard Balan, shown with his son Jack, gives back to show his gratitude for the world-class care the Stollery provides.

PHOTO: DARRYL PROPP

Children’s Hospital Foundation has a different reason for giving. For Richard Balan, president of Raven Truck Accessories (RTA) Holdings and a Foundation trustee, it’s about building upon a legacy of generosity that has helped the Hospital become world renowned. It’s also about the responsibility he feels about his generation doing its part to make Edmonton a great place to live. “When I look at the leaders who created and built up this Foundation, I feel proud to play a role in carrying on the great work that was started by others,” says Richard. “I’m so proud of the incredible work of key community members who saw an urgent need and wanted to make a difference in the lives of children,” he says. Reviewing the list of volunteers involved over time reads like a “who’s who” of Edmonton’s business and community leaders. “Names like Stollery, Comrie, MacEwan, Shaw, Mawji, Muzyka … it’s very humbling to be involved with a Foundation that has a rich history of people who have given to it,” Richard says. But there are other lesser-known, but no less important, names who advocated for children’s health when Edmonton didn’t have its own children’s hospital. “The real legacy is how many people have been involved,” adds Richard. “The contributions by children, by parents, by healthcare professionals and by businesses big and small have helped make the Stollery what it is today.” Richard’s initial engagement with the Stollery was in 2010, when he was part of a committee for the Tee Up For Tots Golf Invitational. Richard was involved in funding the program that sponsors Stollery families to golf with a local celebrity. He remembers that first year fondly, when Kelli and Scott Littlefair got to play a round with Olympic figure skater Jamie Salé and her husband Craig Simpson in 2012. Over the past four years, Richard has sat on two board committees, is an advisor with the Women and Children’s Health Research Institute and is the chair of the Funding Priorities Committee. This committee ensures accountability in Hospital donations, and that funding is being invested in excellence. Richard says he has learned a great deal about the healthcare system, research and donor impact. In addition to volunteering his time with the Stollery, Richard has an extensive list of other community involvements. One of these engagements is with the Junior Achievement program, where he passes on his business experience and life skills to elementary students. Through this work, Richard is inspiring the next generation of philanthropists. And it seems his generosity is contagious. He talks about the amazing experience of having some of the students at Westbrook School donate the earnings from their small businesses to the Stollery, an initiative close to his heart. Richard and his wife Tracey appreciate having healthy kids. They are grateful their two sons, 16-year-old Max and 11-year-old Jack, have never experienced a severe illness. But like many families, they take comfort in the fact the Stollery is there. Last spring, their faith in the Stollery was tested and rewarded. Richard’s youngest son experienced a ruptured appendix emergency, and for about a month, Jack was in and out of the Stollery. Richard recalls how the “front-row experience” provided him with greater insights and made him more appreciative of the worldclass hospital so close to home. “It’s very stressful as a parent, but you also feel very confident and comfortable that you have this great facility and great people there to help. There’s a place that you know your child is going to get excellence in terms of health care,” he says. While the experience was very difficult, Richard says it gave him a clearer vision of how needs might be even better met in the future. “That particular situation provided greater insight into opportunities in terms of where we can continue to


HOSPITAL portrait

BY Sydnee Bryant

Service Calls

PHOTO: MATHEW MARTIN

PHOTO: DARRYL PROPP

Biomedical Engineering Technologist Chuck Neill isn’t someone you’d often see at the Stollery — but he sure keeps things running. tions or consult with him on an issue they’re having with a piece of equipment. Sometimes, he simply has to give them some assistance to make something work properly. Other times, he creates a solution to prevent recurring problems — there are no limits to his creativity. Once, Chuck used a paper clip to replace a shear pin in a motor when the proper part wasn’t available immediately. Chuck, along with the other 25 members of the Clinical Engineering team, schedules regular preventative maintenance for machines and equipment, fixes anything that stops working, and serves as an important resource for information on medical equipment, technology and suppliers. His main areas of expertise, where he does most of his work, are the Stollery inpatient and outpatient units. But, on any given day, you can find Chuck working anywhere from levels 0 to 5 in the Walter Mackenzie Centre, Medical Sciences building and Clinical Sciences building. You’ll see him working alongside doctors, nurses and other medical professionals, troubleshooting problems at patients’ bedsides. Another part of Chuck’s job involves planning new units and renovating older ones. Last year, he was involved in the new ophthalmology clinic, from design to implementation. In addition, Chuck provides information on matters such as the energy loads of the equipment, how much heat devices will give off, new technologies, the physical space required for instruments, the best places to mount machines, and where to place power and data plugs. “For example, in ophthalmology, the lanes need to be a certain length. Once the instruments are in place, they have to be calibrated to the exact length of the space between the patient and the instrument, says Chuck. “It’s very detail oriented.” Fortunately, Chuck loves looking after medical devices to that level of detail. A passion for medicine and electronics, plus a touch of timing led his interest in CHUCK NEILL IS ON THE MOVE. HE LEAVES HIS biomedical engineering technology at age 30. Prior to that, he worked as an emeroffice in the basement of the University of Alberta gency medical technician and construction worker in British Columbia. When he Hospital and heads up to the fourth floor, to the and his wife moved to the Okanagan, Chuck decided to go back to school, with an pediatric inpatient and outpatient wards. His mis- eye on telecommunications. But, while he was waiting to speak with a counsellor sion is to check if the nursing staff discovered any at Penticton College, he flipped through a course calendar and spotted biomedical issues with medical equipment engineering. “It was a mix of electronovernight. Finding a broken paics and medicine, which I always found “I love working on the units, tient monitor, the objective is says Chuck. helping the medical teams do the interesting,” to fix it as quickly as possible. If He graduated from the British Colbest they can for the patients,” it’s for something urgent, he’ll umbia Institute of Technology in 1992, says Chuck Neill. do his work right at the patient’s after two years of intensive classwork. bedside. Otherwise, he’ll bring Soon after, a move to Edmonton led the medical device back to his shop in the under- Chuck to work in the private sector. He travelled around Western Canada for eight ground labyrinth below the Hospital, pull the years, servicing hospitals and advanced medical equipment. An opportunity arose patient monitor apart, find spare parts from the in 2000 to work for the Stollery, and Chuck jumped at the chance to spend more assortment stored in the Clinical Engineering de- time at home with his wife and two daughters. He spent his first year at the Unipartment, fix it up and run a test online to ensure versity of Alberta Hospital working primarily on ventilators, then transferred to it’s working properly — all before most people have the Stollery team in 2001. had breakfast. When he’s not working, Chuck enjoys gardening, martial arts and making wine As a biomedical engineering technologist at the but it’s his passion for the job that keeps him going. “I love working on the units, Stollery Children’s Hospital, Chuck typically starts helping the medical teams do the best they can for the patients,” he says. “We his day at the Hospital at 6 a.m. by walking through work at the bedside, providing support for the staff on direct patient care. That’s the larger pediatric units. Often, nurses and other the most interesting, challenging and fun part of my job, being up there where we medical professionals will stop to ask him ques- can help them make a difference.” STOLLERYKIDS.COM

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THE LAST word

Father Knows Best How these families have the strength to share their stories with us is something I’ll never understand.

NEED PHOTO CAPTION: Met illuptat, dolum quat la Stollery Isaiahhenim Mercier with Chrismagna Scheetz commodio od minkiddolum nonullandre at the 2014 Radiothon. feumsandre conullute veliqui ssequis ad dolum velit.

By Chris Scheetz Morning co-host, CISN Country 103.9

I REMEMBER THE FIRST TIME I WALKED into the Stollery Children’s Hospital more than 15 years ago for my first Radiothon. I was a young father with healthy children and I was scared to face parents and children who were not as Countless parents have told me lucky as we were. What about how their children cry when could I possibly say to they have to leave because the people going through worst? Stollery has become their home. theI’ve shed so many tears and used so many tissues over the years while listening to the stories told by children with medical vocabularies that only doctors should have – all while watching parents, often the dads, looking completely terrified and helpless. How these families have the strength to share their stories with us is something I’ll never understand. I am, however, so thankful that they do. People who have gone through so much, and sometimes with the worst possible end result, still want to give back to the Hospital that gave them so much. 38

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Over the years, I’ve met lifelong friends and so many heroes. Whether it’s the brave children, the families or the entire staff at the Hospital, once a year with their help we get to remind our listeners how lucky we are to have this world-class facility in Edmonton. So many times I’ve talked to families across Alberta and Canada who are here because the Stollery offers their children the best chance to be healthy again. I would not trade our Hospital for any mountain or ocean view with 25-degree weather – or anything. I’ve heard so many stories of how the Stollery has allowed kids to just be kids. Countless parents have told me about how their children cry when they have to leave because the Stollery has become their home and the people have become their family. One story that made a huge impact early in my Radiothon years was of a young girl who was about to experience her last Christmas. A doctor from the Stollery arranged an ambulance ride home for her so she could be home with her family and even went along to make sure everything went OK. As this young girl’s sister read a thank you note about this amazing trip and Christmas spent together, I remember crying like a baby. The thankfulness of that family was incredible. I’m happy to say that that trip was not the only miracle that family experienced, as that young girl has had many Christmases since. Another story is of the young lady who listened to Radiothon while driving a mining truck in Newfoundland, as CISN Country was rebroadcast there. Because of the stories she heard, she decided she wanted to be a nurse at the Stollery Children’s Hospital. A few years later, she realized her goal and was hired as a nurse at the Stollery and is still there today – truly amazing! I often say Radiothon is the wake-up call we all need once a year to remind us of how lucky we are to have healthy children, and how that can change in an instant. Of course, the Stollery Children’s Hospital Foundation needs funds to continue to support world-class research, equipment and the extras that make the Stollery so much more than a hospital. That is where the phone calls come in. I’ve always said that when I hear the phones ringing at Radiothon, it might be the closest thing I’ll ever hear to heaven’s bells. I look forward to catching up with my “Stollery Family” and hearing those phones ring again this January.

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* For

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Save the Date: The next Corus Radiothon will take place on January 19 and 20, 2016. STOLLERY CHILDREN’S HOSPITAL FOUNDATION

2015-10-22 2:29 PM

000Hero


! u o y k n a h T $890,000 raised! *

For 16 years, Tee Up For Tots, founded by Kevin Lowe and Sam Abouhassan, has funded priority projects at the Stollery Children’s Hospital and this year’s sold-out event is no exception. The tournament raised more than $890,000 in gross revenue for the Stollery Children’s Hospital Foundation. These vital funds will support the our Critical for Care campaign through expanded operative services and intensive care units. These new units will feature state-of-the-art operating and procedure rooms, as well as enhanced pre-op space and recovery rooms. * For more information on fundraising targets and expenses, please contact the Foundation at 780-433-5437 (KIDS).

Photo courtesy of SEP Digital Photography

16

th

Special thanks to our 2015 Tee Up For Tots Committee: Cory Wosnack (Chair), Alan Arnstein, Brandon Kot, Brent Horn, Jeremy Herbert, Jodie Wacko, Kevin McKee, Mike House, Nathan Isbister, Noah Jones, Paul Sturt, Sean Montgomery, Stephen Petasky, Ted Kouri and Trevor Joyce.

Annual Tee Up For Tots made possible with the support of our valued sponsors: Presenting Sponsor

Thank you Thompson Construction Group for your support to build healthier communities. Dinner Sponsor

Golf Sponsor

Lunch Sponsor

Champion Sponsors Norma M. Gordon Investments

EDMONTON KENWORTH LTD.

Golf Cart Sponsor

Auctioneer Sponsor

Golf Pro Sponsor

Wine Sponsor

Course Support

Ambassador Family

Photo Sponsor

Print Media Sponsor

Event Sponsors

Hole Sponsors

True North

Holdings Inc.

Food and Beverage Sponsors Zainul and Ashif Mawji

000Hero-TUFT-FP.indd 1 HEROES_Fall2015_p38-39.indd 39

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