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Stories from The Stollery Children’s Hospital Foundation • FALL 2013

Championship

Smile

Cheyanne Mattern prepares for her year as Champion Child, presented by Walmart

PINK

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Heart and Soul A former patient’s legacy lives on through the lives he touched

Calming Support RBC backs a program for children with anxiety

The Renal Deal Learn how the Stollery’s nephrology team cares for patients every step of the way

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Plus: A philanthropy expert’s guide to giving

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contents FALL 2013

Stollery Family

Departments

12 From Galas to Rowboats

5 Community Spirit

Volunteer Tammy Andrews will take on any task, no matter the size

A message from the president and CEO of the Stollery Children’s Hospital Foundation

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14 One of a Kind Audrey Thomas is the Stollery’s only Aboriginal social worker and no two days are alike for her or the families

19 The Renal Deal The Stollery’s nephrology team is successful because each member performs an important role during a child’s health care journey

28 Of Curiosity and Kidneys Two researchers use different paths to help children with renal disease

32 Emergency Rescue Just out of her teens, Tatyanna Murray is one of the Foundation’s younger donors

Features 16 A Champion For All The Stollery’s new Champion Child looks forward to the upcoming year

22 Heart and Soul David Adomako-Ansah lives on through his legacy

26 Perfect Timing The Muhlenfelds’ million dollar donation came when the hospital was looking to invest in a new information management system

30 Don’t Make A (Charitable) Mistake Part one of philanthropy expert Mike Skrypnek’s four-part guide to giving

6 Foundations of Life Racing for a Cure; Curtis Hargrove’s cross-country run; Birthday giveaways; Hair Massacure update; and upcoming events

11 Tech Files The PEA POD allows health care professionals to measure an infant’s entire body composition in just minutes

34 Corporate Hero RBC makes its largest contribution ever to the Foundation for a new program aimed at easing anxiety in children

37 Portrait The Stollery’s new executive director benefits from her time as a clinician

38 The Last Word Jocelyn Regnier looks back on her time as the CN Miracle Match Child Ambassador

16 ON THE COVER: After a double-lung and heart transplant, Cheyanne Mattern, this year’s Champion Child, is well on her way to a healthy life. PHOTO: Curtis Trent S TO L L E RY K I D S. C O M

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Buy your Charity Bear today!

FALL 2013 VOL 1 • No. 3 Stollery Children’s Hospital Foundation ASSOCIATE EDITOR: ALEESHA JEX President & CEO: Mike House, MBA, CFRE, Stollery Children’s Hospital Foundation Board of Trustees Chair: Zahra Somani, B.Ed, MBA, Pirani Group Vice Chair: Marshall Sadd, Lloyd Sadd Insurance Brokers Richard Balan, RTA Holdings Ltd.

LARGE BEAR

$20

Valerie Berger, ATCO Ltd. Herbert Chui, SIF Asset Management Group Inc. Kevin Erker, Lakeside Roofing Douglas Goss, Q.C., Bryan & Company LLP Rod MacKenzie, Legato Resources Ltd. Dr. Raymond Muzyka Catrin Owen, Calder Bateman Communications Gordon Panas, PCL Constructors Inc. Dr. William J. Sharun Micheal Webb, MacLachlan and Mitchell Homes Inc. Ex Officio: Dr. William Cole, University of Alberta and Stollery Children’s Hospital Dr. Susan Gilmour, University of Alberta and Stollery Children’s Hospital Tracy MacDonald, Stollery Children’s Hospital Dr. David Mador, Alberta Health Services Dr. D. Douglas Miller, University of Alberta VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY ASSOCIATE PUBLISHER: JOYCE BYRNE DIRECTOR OF CUSTOM CONTENT: MIFI PURVIS EDITOR: JORDAN WILKINS ART DIRECTOR: CHARLES BURKE ASSOCIATE ART DIRECTOR: ANDREA DEBOER ASSISTANT ART DIRECTOR: COLIN SPENCE PRODUCTION MANAGER: BETTY-LOU SMITH PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTION: Karen REILLY CONTRIBUTING WRITERS: Deepti Babu, Colleen Biondi, Caitlin Crawshaw, Carissa Halton, John Hardy, Michelle Lindstrom, Tricia Radison, Scott Rollans, Mike Skrypnek

This year’s

CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Ashley Champagne, Laughing Dog, Paula Gibson Griffith, Alistair Henning, Heff O’Reilly, Aaron Pedersen, Cindy Revell, Amy Senecal, Curtis Trent, Nicki Wohland

is named

ABOUT THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION The Stollery Children’s Hospital Foundation is committed to funding 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 pave the way to the discovery of new treatments or cures; and specialized pediatric programs that enhance family-centred care, and patient and family outcomes at the Stollery. Content may not be reprinted or repro-

Charity Bear

Maddie

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2012/13 Walmart ŚĂŵƉŝŽŶŚŝůĚ͕

DĂĚĚŝĞĂǁƐŽŶ͘

SMALL BEAR

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duced 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 Return undeliverable Canadian Addresses to: Stollery Children’s Hospital Foundation 1502 College Plaza, 8215 - 112 Street, Edmonton, AB T6G 2C8

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FOUNDATION message

The Gift of Giving Photo: Alistair Henning

By Mike House, MBA, CFRE President & CEO, Stollery Children’s Hospital Foundation

How To Help: Giving to the Foundation comes in all shapes and sizes, sometimes it’s as easy as enjoying a Dairy Queen Blizzard on Miracle Treat Day.

I like to think of myself as a giver. I give my attention and affection to my family. I give my energy to my passions and to my work. I enjoy giving my time to a variety of causes – work-related or otherwise. I even relish giving my close friends a “hard time.” So, as we approach what’s typically referred to as the season of giving, I want to reflect on the many ways the Foundation benefits from this wonderful spirit of giving that exists within our communities. In this issue of Heroes, we explore some concepts around giving that prove you are never too young or too old to embrace the idea of philanthropy. From an 11-year-old who donated her birthday money to benefit sick kids, like her little brother (page 7), or a 10-year-old Stollery patient who’s raised more than $23,000 through his love of hockey (page 8), to an Edmonton couple who donated $1 million to improve pediatric anesthesiology at the Stollery (page 26), it’s clear that charitable giving comes in all shapes and sizes. We at the Foundation rely on the generosity of our many supporters, sponsors and donors in order to achieve our annual goals related to funding excellence at the Stollery. We realize there are many worthy charities in Alberta. Everyone, however, knows someone whose life has been impacted by child health issues. The thought of being able to give – no matter the size or where it comes from – and knowing that your gift will have a meaningful, lasting impact on the life of severely sick or injured child is a powerful notion. While the Foundation is making it easier to give through a variety of methods, including online monthly donations, S T O LL E R Y K I D S . C O M

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sometimes the process related to giving can be downright overwhelming. Philanthropist Andrew Carnegie once said, “It is more difficult to give money away intelligently than to earn it in the first place.” With that in mind, we present the first of a four-part series by philanthropic expert and author Mike Skrypnek, who explores the top seven mistakes related to charitable giving (page 30). Mike will take you through some common pitfalls and educate you on how to maximize your gift. There are other ways to give, too. The Stollery benefits from its more than 1,200 volunteers who donate their time and energy in a variety of ways: setting up and working large fundraisers like Snowflake Gala and Hair Massacure, to equally important tasks like filing and preparing mailouts. You only have to read longtime Stollery supporter Tammy Anders’ story (page 12) to understand how important our volunteers are to the success of the Foundation. This includes patients and their families who are willing to share their unique journey through various speaking engagements throughout the year and at large-scale media events like Corus Radiothon in January. Or the thousands of people who give every last hair on their head to benefit local charities, including the Stollery, through the annual Hair Massacure head-shaving event on February 14. Or the medical professions at the hospital who give it their all to ensure their patients receive the best family-centred care at the most critical of moments. The examples are endless. I hope you enjoy this latest issue of Heroes, and I encourage you to take the time to read and share the many powerful, insightful and human stories that come from the Stollery Children’s Hospital. I will leave you with one more quote from an unknown author that I think says it all. “Deeds of giving are the very foundations of the world.” On behalf of all of us at the Foundation, thank you for all that you give.

THANK YOU: To view the Stollery Children’s Hospital Foundation’s Honour Roll, Shining Stars and In Honours lists, visit stollerykids.com. Correction: In the last issue of Heroes, we referenced the wrong charity in Emily Shiner’s story on page 22. Emily’s hot tub was generously donated by the The Children’s Wish Foundation of Canada not Make-A-Wish Northern Alberta. We regret the error. F a l l 2 0 1 3 | HEROES



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foundations of life

Smile Cookies!

Photo: Alistair Henning

Ear to ear: Thank you to Tim Hortons and everyone who purchased Smile Cookies – this year’s campaign raised more than $220,000 for the critical care campaign.

Hair Massacure Gets a Makeover director of Hair Massacure, saw the small fundraiser she co-founded grow into one of the largest events of its kind on the planet. Today the annual Hair Massacure event is a part of Edmonton’s culture, attracting thousands of participants each year and raising more than $7.5 million in support of local charities dedicated to helping sick kids and their families. Starting this year the three charities, the Stollery Children’s Hospital Foundation, Make-A-Wish Northern Alberta, and Ronald McDonald House Northern Alberta will join forces to continue moving this renowned philanthropic effort forward. During this transition year, Tammy will serve in an advisory role supporting the executive committee. Her role may not be as active as it once was, but Mike House, the president and CEO of the Stollery Children’s Hospital Foundation, will never forget Tammy’s legacy and everything she did to make Hair Massacure the event it is today. “The MacDonald family and their inspiration, their youngest daughter Kali, are the reason this fantastic event exists. It is through their stalwart commitment, passion and vision that Hair Massacure has become one of the world’s largest head shaving events,” says Mike. “On behalf of all of the staff 

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at these partner charities, and the children and families that have benefited as a result of Tammy and her family’s amazing generosity, we want to thank Tammy for her exceptional leadership and heart these last 11 years.” And, mark your calendars because the date and time for next year’s event have been confirmed. The 2014 Hair Massacure will take place on February 14, 2014 at West Edmonton Mall Ice Palace. Organizers are already contacting volunteers, sponsors and suppliers with the goal of making the 2014 event the best year yet.

Photo Provided by Hair Massacure

Over the past decade, Tammy MacDonald, executive

Interested in getting involved with this year’s Hair Massacure? Visit hairmassacure.com or contact the Stollery Children’s Hospital Foundation for more information. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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Photo: Paula Gibson Griffith

No Kidding Around When Cathy and Jack Ramstad asked their daughter

Photo Provided by Cotton Club Edmonton

Photo Provided by Hair Massacure

Ella what she wanted to do for her 11th birthday party last March, Ella asked if all her gifts could go to the sick kids at The Stollery Children’s Hospital. After a little discussion, the family worked out the logistics and decided to ask her friends to donate money to the Stollery Children’s Hospital Foundation instead of bringing a birthday gift in order to benefit sick kids like Ella’s own little brother Parker. Ella wanted to do something different this year and came up with the idea on her own. Ella is described as a kind and caring girl and when she suggested the idea to help other kids, it came as no surprise to her parents. Cathy credits Ella’s giving spirit and desire to include others to the time she’s spent over the years at The Stollery and Glenrose Hospitals as well as the GRIT Inclusive Program with her nine-year-old brother Parker, who has cerebral palsy. She learned from a young age that she is very lucky and that some children aren’t born as healthy as others. Ella helps her brother enjoy an inclusive lifestyle every day and says that she believes all kids, regardless of their needs, should feel included. So, after her birthday festivities raised $375 for the Foundation, Ella is already looking ahead to next year and wants to do the same thing again. “Everyone was so great at the Stollery and expressed to Ella what a great thing she did”, explains Cathy. Ella enjoyed getting her photo taken for her philanthropic efforts but she told her mother that she was most proud of the fact that she was able to do something that could make a difference. “She loved it and I’m not surprised that she wants to do the same thing for her next birthday.”

A Night at the Cotton Club: The cool cats at the Edmonton Marriott at River Cree Resort and RE/MAX held the 6th annual Cotton Club Edmonton gala on October 26. Guests relived the roaring 20s as they got their swing on and enjoyed great eats and smokin’ hot jazz, all in support of children’s health. For more information about the Cotton Club Edmonton gala visit cottonclubedmonton.com. S TO L L E RY K I D S. C O M

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Under The Hood It all started with a car. Pastor Jan Pastucha of King of Kings Lutheran Church in St. Albert has been interested in classic cars for as long as he can remember. Eight years ago he took his passion to the next level and started work on restoring a 1929 Ford Model A. Finishing the vintage beauty was a proud moment for Jan and it wasn’t long after that he decided to start RevRev Rods & Relics Revival car show at the church because really, what good is having a classic car if you can’t show it off? But Jan wanted to make sure that this show was special and not just about cars. Around the same time he started work on his prized Model A, Jan’s brother suffered third-degree burns and was forced to stay in the hospital for an extensive recovery period in the United States. Jan would often visit his brother during his treatments and was always inspired to see his brother take time to visit the hospital’s pediatric department and mentor children who were also going through a difficult time. This act of selflessness by his brother laid the foundation for an increasing philanthropic attitude in Jan. “After seeing the mentoring my brother did while going through his own difficult period, I just really wanted to do my part as well,” Jan explains. That’s why when the engines started for the first ever RevRev Rods & Relics Revival in 2008, Jan wanted all proceeds raised from car registration, sponsors, a silent auction and other avenues during the event, to go directly to the Stollery Children’s Hospital Foundation. Over the past five years, Jan has seen his event grow and each year it’s closer to the familyfocused fundraiser he originally envisioned. This last year the event added a go-kart-building competition for kids to go along with the annual 1940sand-50s Pin Up Pageant, raising $6,984 for the Foundation. Jan says that he wants RevRev Rods & Relics Revival to appeal to more than just “car people” especially since it’s all for such a great cause. “It’s an opportunity for everyone, whether they have a car or not, to come and take a walk down memory lane and enjoy cars they may not see on a daily basis,” Jan explains. “It’s a great day to come out and support the community. The Stollery sees many critical care children and we want to do what we can to help. What they face is sometimes daunting; if there is a way we can be part of their healing and recovery then we are glad to be a part of it.”

Do you have a car you want to share with the community? Visit hooliganrevrev.blogspot.ca for more information about the annual RevRev Rods & Relics Revival fundraiser for the Stollery Children’s Hospital Foundation. The event takes place every July at the King of Kings Lutheran Church in St. Albert. F A L L 2 0 1 3 | HEROES



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foundations of life

Photo: Paula Gibson Griffith

Stabbler Stollery Showdown Maeson Stabbler has a huge heart, even though

Celebration Because they were both born in the month of July, Nina and Leona Fedun always hold their birthday parties together. So this past summer when Nina turned seven and Leona turned five, the sisters decided to put a twist on their annual celebration. The Fedun family noticed that more and more birthday parties their daughters attended had included some philanthropic aspect. When presented with this idea, the girls’ mother says it didn’t take long to choose an organization. “One of Leona’s friends in preschool has a little sister who is at the Stollery almost full time,” Karen Fedun explains. “Leona has taken quite a liking to her, so as soon as I gave the girls the different options, their choice was instantaneous.” In total the birthday celebration raised $115 for the Stollery Children’s Hospital Foundation and earned the girls a trip to the hospital to learn more about how their efforts will make a difference in the lives of sick children. “It was a great experience,” recalls Karen. “The girls were both very attentive and everyone at the Stollery was warm and welcoming. They are blessed children so it’s really great that they are learning the power of giving at a young age.” And to the girls, the best part of their Hawaiian-themed birthday party was probably having fun with their friends, but if you ask their mother the best part came a few weeks later.“My husband was getting ready to go to a fundraisier of his own and without any prompting or guidance, Nina came downstairs and gave him a $20 bill,” recalls Karen. “I think that doing this for their birthdays has really helped our girls see how important it is to give back.” Blizzards in August: The Stollery Children’s Hospital Foundation, Children’s Miracle Network and Foundation president and CEO Mike House (pictured, right, with DQ operator Bi Yu and her associate) would like to thank everyone who enjoyed a Dairy Queen Blizzard (or two) for Miracle Treat Day on August 8 to support Stollery Kids like Maria Lovsin (pictured, left). Totals are still coming in, but it looks like there is a strong possibility that the Edmonton and northern Alberta region will keep its first place finish within Canada. 

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Photo: Nicki Wohland

it once had a hole in it. In 2007 Maeson and his family had to drop everything and rush to the Stollery Children’s Hospital from their home in Unity, Saskatchewan. Maeson, who was five years old at the time, underwent five hours of open-heart surgery to repair the hole in his heart as well as a valve that was leaking. The Stabblers’ stay at the Stollery was short, just five days, but it definitely made a huge impact on the family. Since his surgery Maeson has always asked kids who attend his birthday parties to bring money instead of gifts. Maeson donates half of the money to the Stollery Children’s Hospital Foundation each year. In 2012, when Maeson was 10, he decided to bring his philanthropic efforts to the next level and thus began the Stabbler Stollery Showdown, a hockey tournament that in its first year raised $23,027 for the Stollery Children’s Hospital Foundation. The puck is slated to drop for year two of this annual event in Cold Lake, where the family now lives, in April at the J.J. Parr Recreation Centre. The Atom and Pee Wee “S3” tourney was designed for fun, but more importantly, it is a chance to give back to the hospital that did so much for Maeson and his family. “It was all his idea to do the tournament; he’s a hockey freak,” says Michelle of her now 11-year-old son. And, despite the huge success that the inaugural tournament had, Maeson feels there is always room for improvement. “He always wants to do better. This year his goal is $30,000,” says Michelle of the fundraising target from the planned eight-team, fouron-four Atom and Pee Wee tournament. Truly a family affair, last year’s event saw Maeson’s younger brother playing on a team, while his sister sang the national anthem to kick off the games. “We kind of rolled with it last year and it went awesome,” Michelle says. Maeson, who went door to door to get sponsors, was also recognized for his efforts in the fundraiser by being nominated for a Great Kids Award, through the government of Alberta – which he won.

For information about the Stabbler Stollery Showdown or to support the event, visit s3showdown.com.

Photo: Alistair Henning

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Photo Provided by Curtis Hargrove

The Highwayman

Call To Action: Curtis Hargrove’s work for the Stollery Children’s Hospital Foundation all started with a phone call from Stollery Kid Delaney Saunders in 2011.

A lot of people go the extra mile for the Stollery Children’s Hospital Foundation, but very few have gone as many as Curtis Hargrove. On August 9, 2013, Curtis crossed his personal finish line at Mile 0 in Victoria, officially completing his run across Canada. During the 24-year-old’s cross-country trek, which started in Newfoundland in May 2012, Curtis often covered up to 50 kilometres a day. His adventure had a few mishaps, which included a climate-forced break in Alberta (if you think driving the QE2 during a blizzard is difficult, trying running it) but Curtis never gave up his goal of traversing the Great White North on foot. His trek became a fundraiser for the Foundation. “At times it was tough, but the pain I was going through was nothing compared to what some of the kids at the Stollery go through every day,” Curtis says. When Curtis was on the radio in his hometown of Cold Lake in December 2011, he received a phone call that changed his life. He had just finished running across B.C. and Alberta to raise money for the Terry Fox Foundation and one caller asked if he could do the same for the Stollery. That caller was Delaney Saunders. Delaney was 10 at the time and was being treated for cancer at the hospital. Curtis eventually made the trip to Edmonton (he used a vehicle this time) and met with Delaney and other people at the Stollery. That’s when the light bulb lit up and Curtis’ next charitable adventure was born. “It kind of happened on a whim,” he explains. “When I went to the Stollery I never really planned to do anything special, let alone run across Canada, but when I was down there I knew immediately that I wanted to help in any way I could.” Curtis may have run out of road across Canada, but his philanthropic efforts for the Stollery are far from over. Last August Claudia Melto held the first ever Curtis Hargrove Incentive Half Marathon in Cold Lake to raise an additional $4,200 for Curtis’ philanthropic work for the Foundation, bringing his lifetime total close to $200,000. Curtis is currently speaking with the Running Room to turn this run into an annual event for the Foundation with the possibility of expanding the race to a full marathon next August. “We had a lot more runners than I expected especially since it was the first year,” Curtis says. “It’s really exciting; I hope it continues to grow so that I can give even more support to the Stollery Children’s Hospital.”

Racing for a Cure around $50,000 for the Stollery Children’s Hospital Foundation. One of the event’s co-founders, Ashif Mawji, was proud of the accomplishment but he knew Racing for a Cure had even more potential. The race founders, including Ashif and Emile Najjar, set the bar high for the 2013 edition at $250,000. When all was said and done, and with the help of the CN Miracle Match program, Racing for a Cure 2013 raised almost $350,000. “I think there was a lot more awareness this year,” explains Ashif. “CN helped out a lot too.” Racing for a Cure was started by a group of car enthusiasts looking for

a way to give back to the community. The group decided to charge money for rides in Ferraris, Lamborghinis and other high-performance vehicles at Castrol Raceway and donate all proceeds to children’s health, benefitting both the Stollery Children’s Hospital and Kids with Cancer. Last year saw the addition of a live auction further boost the amount raised and while Ashif was blown away by the amount of support the event has received, he isn’t entirely surprised. “We’ve got a lot of people who are extremely passionate about anything to do with children,” he explains. “It really resonates; we’ve all been affected one way or the other and the Stollery is such a great cause. If we can do even a little bit to help out, then why not?”

Photo: Alistair Henning

In its first year, Racing for a Cure 2012 raised

Ignition: For more information check out the website at www.rfacedmonton.com.

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foundations of life

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 and benefiting 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.

Charity Bears Date: November and December 2013 Location: Participating BMO, CIBC, RBC Royal Bank, and Scotiabank locations. It’s also available at BearyLand, located in the lobby of the Stollery Children’s Hospital, 8440 112 Street. This year’s Charity Bear is named Maddie after our 2012/13 Walmart Champion Child, Maddie Dawson. The large bear retails at $20 and the small at $12. Purchase your Maddie Bear today and support Stollery Kids like Maddie.

Edmonton International NEW YEAR’S EVE Gala Date: December 31, 2013 Time: 7 p.m. to 1 a.m. Location: Fantasyland Hotel in West Edmonton Mall Celebrate the New Year in style with Edmonton’s premier New Year’s Eve Gala. A spectacular evening of food, fun, and entertainment. Visit edgala.com for more information.

15th annual Corus Radiothon Date: January 22 and 23, 2014 Time: 6 a.m. to 6 p.m. Location: Lobby of the Stollery Children’s Hospital Tune in to Corus Radio Edmonton’s CISN Country 103.9, The New 925 Fresh FM and 630 CHED as they broadcast live from the Stollery Children’s Hospital to raise money for our kids. Children, families and health care professionals share inspiring stories of their time at the hospital.

Fondue for Little Miracles Date: November 2013 Location: The Melting Pot Edmonton, 2920 Calgary Trail The Melting Pot Edmonton is excited to launch its fourth annual Fondue for Little Miracles Campaign. Throughout the month of November, customers can support the Stollery Children’s Hospital Foundation by making a $10 donation. For every $10 donation, the customer will receive a $20 Fondue for Little Miracles Card to use on future purchases at The Melting Pot Edmonton. They hope to raise $20,000 every year through this campaign. In the last three years, they’ve raised more than $50,000! Please call 780-465-4347 or visit meltingpot.com/edmonton for details.

IMPORTANT NOTE REGARDING TAX RECEIPTS In order to be eligible for 2013 Tax Receipts all donations must be received by December 31, 2013 Donors wishing to claim their donations for the 2013 tax year must ensure that the funds are received (or postmarked) by December 31. Donations received after December 31, 2013 will be receipted for the 2014 calendar year.

Medicine Cup Charity Tournament Date: February 7 and 9, 2014 Location: Pleasantview, McKernan and Empire Park Outdoor Rinks Get ready for the 10th Annual Medicine Cup Charity Tournament from February 7 to 9, 2014. The tournament invites a variety of health care professionals and students from across the province to participate in an outdoor 4-on-4 hockey tournament in order to raise funds for the Stollery Children’s Hospital Foundation. The past nine events have been a huge success raising almost $80,000. For more information on how to support this great event go to mcct2014.com.

12th Hair Massacure 4

th

annual Stollery Family Day Classic

Date: February 15 to 17, 2014 Location: Terwillegar Rec Centre The Stollery Family Day Classic is focused on children, families, active living and good health. The mission of the hockey tournament is to create an event that promotes awareness and support for the Stollery Children’s Hospital among youth and the community at large. Visit familydayclassic.com or contact Tracy at 780-242-2347 for more information, to volunteer, sponsor the event, or donate items to the silent auction.

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Date: February 14, 2014 Location: West Edmonton Mall Ice Palace Hair Massacure kicks off in January with many participants coloring their hair pink. The campaign culminates with a massive head-shaving and hair-donating event held at West Edmonton Mall’s Ice Palace on February 14. This unique event raises funds for The Stollery Children’s Hospital Foundation, Make-A-Wish Northern Alberta and Ronald McDonald House Northern Alberta. For more info or to register, check out hairmassacure.com.

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10/30/13 10:40:10 AM


BY Jordan Wilkins

tech files

Just Say Peas It’s a piece of equipment that requires patients to enter a futuristic-looking pod. Once the patient is inside the temperature-controlled chamber, the operator inputs important information specific to the patient into the machine. About two minutes later, the test is complete and the patient leaves the pod with an accurate reading of their body composition. Despite its complexity, the machine is actually portable and very easy to operate; just don’t expect to get inside the pod unless you weigh less than nine kilograms. It’s the PEA POD, and according to Dr. Diana Mager (pictured here), an associate professor of clinical nutrition with the Department of Pediatrics, it’s a piece of equipment that holds great potential for patients and health care professionals alike. Since the Stollery Children’s Hospital Foundation assisted in the purchase of the PEA POD, it has been an invaluable piece of equipment. Dr. Mager anticipates using this machine frequently to assess body composition in infants with cholestatic liver diseases. This is important as many infants and children experience significant challenges with growth and development when they have chronic liver disease. Therefore a lot of these children need extra nutrition to grow and develop. Dr. Mager currently has on an ongoing study looking at the impact of branched chain amino acid supplementation in infants with cholestatic liver diseases awaiting liver transplantation. These amino acids form an important part of the body and are needed so infants and children can grow and develop. Dr. Mager’s plans are to use the versatile machine during her investigation into infants with liver disease, and how proper nutrition can assist in healthy growth during both the pre-transplant and post-transplant stages of care. “The PEA POD is going to be a key part of our research,” she explains. “It’s easy to use, non-invasive, which means that tests can be performed repeatedly.” This last aspect is especially important for Dr. Mager who needs to continually monitor and support an infant’s growth in order to see the effects of her nutritional interventions. Dr. Mager will study the growth outcomes of babies with liver problems and look at creating the best nutritional plans for their short- and long-term health. Finding what works best could be the key to a long and healthy life for children who undergo a transplant at critical stages in their development cycle. “We know that well-nourished babies tend to do a lot better post-transplant,” she explains. “That’s why it’s so important for us to look at different strategies and the S TO L L E RY K I D S. C O M

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Photo Provided by Alberta Health Services

Measuring body composition and growth rate in babies has never been easier for Stollery researchers

PEA POD will obviously play a vital role in that process.” The PEA POD is usually found in the Clinical Research Unit at the University of Alberta, but Dr. Mager feels that, because of how useful it is, it won’t be long until other departments will want to use it for research as well. She says that the technology the PEA POD relies on, allows health care professionals to do a variety of metabolic studies that can help better understand the underlying determinates for a wide range of infancy diseases. The PEA POD helps determine the fat-free mass of the infant along with the child’s body surface area and other measurements. Thanks to the PEA POD, health And, while so far it’s been care professionals can measure primarily used in cases of chronic illness, there a baby’s entire body composition in a short time. is potential for its use in other studies. “There’s no question that any child who doesn’t receive proper nutrition during important development stages can run into problems down the road,” Mager says. And that’s where the true potential worth of this specialized equipment can be seen. Now, thanks to the PEA POD, a clearer understanding of an infant’s body composition is never more than seven minutes away. “Really, what the PEA POD does is help us see the entire picture of the baby and how that picture changes during this critical period of human development.” F A L L 2 0 1 3 | HEROES

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10/28/13 5:14:12 PM


volunteer Hero

BY Caitlin Crawshaw

Galas to Rowboats Photo Provided by Row for Kids

Behind the scenes or front and centre, volunteer Tammy Anders does every task, no matter how large or small ROW YOUR BOAT: Although Tammy’s (fourth from the left ) rowing experience was limited, she didn’t let that stop her from joining the Row for Kids event.

It all started on a whim. A decade ago, a friend told Tammy Anders about some volunteer work she’d been doing for the Stollery Children’s Hospital Foundation. Tammy casually suggested to her friend that she let her know the next time she was planning to volunteer. At the time, Tammy had been kicking around the idea of doing some work – “It was Tammy’s duties changed and she volunteer always in the back of my has since done almost every job mind,” she says – but she there is to do at the Snowflake Gala. was at a loss about how to get involved. So, true to her word, when her friend called to see if Tammy could fill in for her mother at an upcoming telethon event, Tammy went for it – even though it wasn’t really in her wheelhouse. “I was really nervous about being on camera,” Tammy recalls. To make matters worse, when she arrived at the studio Tammy discovered that Oilers fans’ favourite Ryan Smyth and his wife Stacey were sitting right in front of her. She knew there would be no avoiding the camera. 12

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But, in the end, her experience wasn’t as scary as she’d expected. Tammy, a hockey fan, was even able to get Smyth’s autograph. Local country music star Adam Gregory – then just a newbie on the music scene – was also helping out that day. Seeing the stars was a pretty neat experience for Tammy, as was her involvement in such a big production. Tammy was drawn to the atmosphere and seeing how Foundation events operate behind the scenes. She had officially caught the volunteer bug. After a few weeks of volunteering in the Foundation’s office – filing and calling monthly donors whose credit cards had expired – she became involved in volunteering at the annual Snowflake Gala, one of the Foundation’s most popular events. “It’s a high-end, formal event. Even kids are dressed to the nines, with boys in tuxes and tails, girls in ball gowns,” she says. The event is packed with things to do for both adults and kids, including silent auctions, family portraits, magic shows, live pianists, a candy bar and a gaming tent for video game connoisseurs. This means that there is no shortage of jobs for volunteers. Her first year at the event, Tammy remembers running S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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and donations,” she says. Johnson adds that the Foundation’s biggest events, like the Snowflake Gala, also couldn’t happen without many hands on deck. Tammy has no personal connection to the Stollery, although she’s been touched by the stories of patients and families she’s heard at various fundraisers over the years. Her motivation, as a volunteer, comes from the sheer enjoyment of helping out. It’s also a great way to meet other like-minded people. “Of course the ultimate goal is helping kids and the hospital,” she says, “but a lot of time the events are just plain fun. You make lots of friends and you get to see them throughout the year. It’s win-win.”

Photo: Stephen Wreakes

Lend A Hand: Would you like to volunteer for the Foundation? Contact Stacey Johnson, the Foundation’s volunteer coordinator, directly at 780-431-4606 or visit stollerykids.com/volunteer.

Renaissance Women: Whether it’s planning galas or receiving pledges, Tammy Anders (right) is up for anything when volunteering for the Foundation.

Photo: Instant Memories

errands to collect the table centerpieces – donated by her fellow telethon companions, Ryan and Stacey Smyth – and then assembling them. Her job changed the following year and to this day Tammy has done almost every job there is to do, from registration to balloon wrangling to managing the event’s silent auction. For a long time, the Snowflake Gala was her favourite Foundation event, but after more than a decade of volunteering, and over 15 different events, choosing a favourite isn’t easy. “They’re all fun and have their own little quirks and differentness,” she says. There’s the Cotton Club (a 1920s swing dance with an auction and raffle), the Mother’s Day Run and Walk, and several golf tournaments, to name a few. A former fundraiser Tammy enjoyed was Busy Being Fabulous, a beauty-themed event featuring manicures, makeup applications, kiosks selling jewelry, a fashion show, hors d’oeuvres and, of course, fancy drinks. As time goes on, Tammy’s volunteer repertoire continues to expand with the number of events held in the community each year. One of her most recent contributions – helping out with Row for Kids – happened as a result of assisting with tear down at Busy Being Fabulous. Around midnight, Tammy and some of the other female volunteers were carrying furniture from the second level of the Matrix Hotel to the ballroom area. Although everyone had changed out of their dress clothes to do the heavy lifting, it was a bit of a struggle moving large, leather sofas and rolled-up area rugs downstairs. At one point, one of the volunteers remarked that it reminded her of carrying her boat at rowing practice. It turned out that they were all on a rowing team for the Stollery called Kids in the Hull and needed another team member. In her typical volunteer-now-ask-questions-later style, Tammy was more than happy to dive in. Now she paddles for kids at the Stollery’s annual fundraising regatta – Row for Kids – every September. But while she enjoys these big, flashy (and splashy, in the case of Row for Kids) events, Tammy just as often helps out with some of the less glamorous but equally important tasks like office work. One time, she just stood in the lobby of College Plaza for hours, directing people to the correct floor for a Foundation meeting. “I’ve done thousands of tax receipts and filed and mailed them,” she says, casually. “Lots of folding of paper and putting data into a computer.” Volunteer coordinator Stacey Johnson is new to the role and hasn’t had much of a chance to work with Tammy yet. But, she says committed volunteers like Tammy are critical for the Foundation’s fundraising efforts. “There is so much we wouldn’t be able to do without them – like the Radiothon, which takes lots of volunteers to take phone calls

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10/29/13 5:20:10 PM


meet the specialist

One of a Kind

Photo: Ashley Champagne

BY Lisa Ricciotti

As the Stollery’s only Aboriginal social worker, no two days are alike

A

udrey Thomas is not a tall woman, so she

stands on tiptoe to bring a mysterious bundle down from the top of a filing cabinet in her workspace at the Stollery Children’s Hospital. She carefully unwraps a swath of colourful cloth to reveal the contents: tobacco, braids of sweet grass, dried cedar and a bound bunch of aromatic sage. “I’m an Aboriginal social worker and these are some of the tools of my trade,” she says. “They’re sacred herbs, used in traditional smudging ceremonies to cleanse and heal. I keep them in my office in case any of our Aboriginal families want a ceremony performed for their sick child.” Audrey explains, however, that she doesn’t perform the ceremonies herself. 14

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Instead, she acts as a bridge, linking families with those who do, such as the Aboriginal cultural helpers at the University of Alberta Hospital. As for the fabric, Audrey explains that it’s broadcloth patterned in traditional healing colours, that’s given to an Elder, with proper protocols, to offer prayers at a sweat lodge ceremony. She keeps a supply on hand, knowing that many parents and children arrive at the Stollery in an emergency situation. “A parent comes with their sick child and often they come here with nothing, just the clothes on their backs. They’re stressed and worried and may not have the financial resources to purchase the required supplies; I try to make the situation less stressful by providing them with the appropriate supplies.” S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

10/28/13 5:16:18 PM


Photo: Ashley Champagne

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Photo: Ashley Champagne

Then Audrey opens the large file cabinet to reveal a surprising stash. Inside, neatly folded and stacked, are more emergency supplies - donated clothing, toys and teddy bears, essential toiletries and other away-fromhome supplies - all available for families who suddenly find themselves a long, long way from home with a very sick child. Like a best friend who’s thought of everything needed to navigate troubled water, Audrey is ready for any situation and is always ready to help. Audrey has a formal job description somewhere amid the happy whirlwind of work in motion that covers what seems to be her desk, where bursting binders leave a visible paper trail of information on Aboriginal resources and upcoming events. She locates it, but the formal language of the bulleted document is a weak reflection of what she really does. Simply put, Audrey’s mission is whatever it takes to bring comfort to Aboriginal patients and their families during their Stollery experience. FIRST AND FOREMOST: Audrey Thomas helps put Aboriginal families “Sometimes I help arrange a healing ceremony, sometimes I provide at ease at the Stollery with her insight and social-work skills. a fresh change of clothes. I might help parents find a place to stay or connect them to local Aboriginal support organizations in the city or in their home communities. And sometimes I’m just there to listen, to share tears for Aboriginal patient families by Aboriginal workers proved to be so and laughter during their child’s stay. If I can make the hospital a less scary popular that her position was reclassified to create a new position for an place for Aboriginal patients and their families then I’ve succeeded.” Aboriginal social worker. As one of the many social workers at the Stollery, Audrey is well aware While children from across Canada come to the Stollery for its specialthat sacred herbs and prayer-print fabric are not what most people expect ized services, the majority of its patients hail from Edmonton (with the to find in a hospital office. But then Audrey is also not your typical social second-largest Aboriginal population among Canada’s urban centres) as worker; she’s the Stollery’s only Aboriginal social worker, a full-time pos- well as northern Alberta and other areas in Canada’s most northerly latiition she’s held for over seven years. “I do things a bit differently, but first tudes where children’s hospitals are scarce and the population is largely and foremost I’m a social worker,” Audrey says. “I have a degree from the Aboriginal. Add in the sad reality that a high percentage of Aboriginal University of Calgary and my purpose is the same as other social work- children are affected by serious illnesses and disease due to poverty, subers here—to provide practical and emotional support for patients and standard housing, poor nutrition and lack of access to local health care, their families. But I’m also a proud and it’s easy to see why Audrey’s posAboriginal woman, and I bring that ition at the Stollery is so important. Audrey is also not your typical social perspective to my work.” Audrey estimates that Aboriginal worker; she’s the Stollery’s only There’s no such thing as a typical children account for 15 to 25 per Aboriginal social worker, a full-time day for Audrey, who embraces the cent of the Stollery’s patients. She position she’s held for over seven years. tries to help them all but when she’s multitasking demands of a position where she simultaneously acts as an stretched too thin, her primary focus advocate, facilitator, mediator, navigator, mentor, translator, a walking becomes the more complex needs of families from northern Alberta encyclopedia of all things Aboriginal, but most important of all she is a who’ve travelled hours by car or flown in from isolated communities. kookum (grandmother) to all the little ones she meets. She always tours These are the patients that Audrey can help in a way that other nonparents through the hospital, introducing them to Stollery resources like native social workers can’t. “As soon as I speak Cree to them, I see their the phones and computers in its family room where parents can re-con- barriers go down. Sharing a language opens so many doors. Suddenly nect with the home front, access a medical resource centre or simply the hospital isn’t so terrifying because they’ve connected with someone unwind while watching the calm rhythm of fish swimming in a large who understands their ways and life experiences. It’s like they’ve found a aquarium or going to the Aboriginal gathering room on the fifth floor friend or family member to help them through.” for a sweetgrass ceremony. She’ll also invite them to join other patients, Audrey likes to use humor in her work and often it’s directed at herfamilies, staff and visitors for free tea and bannock on Wednesdays. Au- self. Take, for example, the story she tells of a another social worker who drey makes the tea; her sister makes the bannock and together the com- asked for her help after an Aboriginal mother refused to speak to her and bination makes magic. “It’s an opportunity for parents to forget for a few ordered her out of her child’s room. “As I went to see the mother, I was moments that their child is a patient,” Audrey explains. all scared and shaking inside, wondering what I’d have to deal with,” she A member of the Sturgeon Lake Cree Nation from the Treaty 8 area, recalls. “But I walked in, said ‘Tansi’ (Cree for ‘How’s it going?’ or ‘How Audrey grew up a few hours north of Edmonton near Valleyview. There are you?’) and she immediately spoke Cree back to me and said ‘finally, she was raised in the traditional ways of Cree culture and language before someone who speaks Cree, it’s so hard trying to think and speak in Engleaving the community for post-secondary education and a career in so- lish all the time!’ She invited me to sit down and asked where I was from cial work. She’s always chosen to work with children, including 14 years and then if I knew so-and-so. Here I was expecting a big problem and all in First Nation Child and Family Services; starting as a frontline worker she wanted was to hear someone talk to her in her own language. Often in the Wabasca-Desmarais area and working her way up to a child wel- one of the first questions I ask is where a person comes from and more fare director for the Samson Cree Nation before coming to the Stollery. often than not, there is a shared connection from that area.” Audrey says she never imagined she’d work in a hospital setting, but Sometimes, even in a hospital with leading edge technology and rewas attracted to the Stollery in 2006 by the chance to get involved in the search, the solution is as simple as that. For Aboriginals at the Stollery, second year of a pilot project as a family support worker. The funding ran Audrey provides human presence that’s familiar, comfortable and makes out the following year, but the concept of providing specialized support them feel at home. 15

10/28/13 5:16:51 PM


feature HERO

Photo: Nicki Wohland

Princess Party: Snow White made the trip to Edmonton just so she could attend Cheyanne Mattern’s introduction as Champion Child, presented by Walmart.

A Champion I for All BY Carissa Halton

Cheyanne Mattern has a new bike. She’s learning to ride it thanks to her heart and double-lung transplant

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10/28/13 5:17:32 PM


Photo: Nicki Wohland

Photo: Nicki Wohland

n

Pass the torch: Cheyanne Mattern’s inauguration was attended by last year’s Champion Child, presented by Walmart, Maddie Dawson, and CTV Edmonton weather specialist Jesse Beyer, also a former Champion Child for the Children’s Hospital Foundation of Saskatchewan in 2002.

I

t was the July long weekend in 2011 and Amanda

In the weeks after collapsing, the pressure in Cheyanne’s lungs and Mattern and Thomas McCallum were in a rush to pack the heart continued to grow. She was airlifted to the Stollery Children’s family car for a short road trip from their home in Calgary Hospital Pediatric Intensive Care Unit (PICU) where she was diagnosed to Edmonton. Their four-year-old daughter, Cheyanne Mattern, with pulmonary hypertension (PH). PH is associated with narrowing of was less interested in packing. Normally healthy and cheerful, she the blood vessels in the lungs, which started to shut down. As her heart was uncharacteristically tired, and struggled to pump blood through she followed her mom, begging to these constrained passageways, the Cheyanne suffered three cardiac be picked up. strain caused it too to fail. arrests over her first weekend Before Amanda could reach Cheyanne was immediately in the hospital. down to hoist her, Cheyanne’s connected to the venoarterial small body slumped to the extracorporeal membrane oxyground. As Thomas called the ambulance, Amanda held her daugh- genation (VA ECMO) machine, a life-saving device that effectively ter, who turned the colour of the clear summer sky. bypassed her heart. In those first two weeks on the machine, The family spent the weekend at the hospital where Cheyanne suf- Cheyanne had to be completely sedated. It was hard for Amanda and fered three cardiac arrests. As Amanda and Thomas waited for a diag- Thomas to see her immobile. nosis, they didn’t think about the future. Even if they had, they’d never “She lost all visible muscle in her legs,” remembers Thomas. She could have guessed that in two months their little girl would be successfully occasionally communicate with her eyes and faintly squeezed Amanda’s recovering from a double lung and heart transplant. hand. It took a toll on her parents, and the medical team, too. S TO L L E RY K I D S. C O M

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10/28/13 5:38:20 PM


Photo: Alistair Henning

anything else.” The donor was significantly bigger than Cheyanne, however doctors felt Cheyanne could no longer wait. On the eve of the transplant, Amanda and Thomas slept at the hospital. Cheyanne’s surgery went on through the night and her chest remained open for the next five days. Then her new organs began to do their job. Two weeks after surgery, she was moved out of intensive care and by Christmas, she had joined Amanda and Thomas, who were staying at Ronald McDonald House. Cheyanne is now six years old, and this summer she became a Champion Child, presented by Walmart, representing the Stollery Children’s Hospital. Champions is a Children’s Miracle Network program that honours remarkable children from Canada and the United States who have triumphed despite severe medical challenges. When Cheyanne was first chosen her family knew there would be a lot of work involved – speaking at functions and leading the Miracle Network’s Walk for Miracles in the spring. They were not aware that the role would also include a trip to Toronto and then on to Orlando. When they heard about the trip, they were ecstatic. Not only is there a chance to meet princesses and movie characters, “We are so ready for a fun break!” says Amanda. In October, Cheyanne met Canadian Champion Children from the other 12 children’s hospitals that partner with Children’s Miracle Network in Canada. In Toronto, the children attended sponsor parties and luncheons. Then the children and their families boarded an Air Canada flight to Orlando where all 170 Champion Children from across North America convened. Their families visited Disney World with multi-day park hopper passes. Breakfast with all the Disney characters and a final medal ceremony capped off the trip to celebrate each child’s remarkable resilience. JOIN THE CLUB: Cheyanne Mattern received the ceremonial Mickey Mouse ears, symbolizing her upcoming trip to Disney World where she will meet many more Champion Children, presented by Walmart, from across North America.

“It’s got four wheels!” Cheyanne is vibrating with

enthusiasm over her new bike. It’s a bike she can now ride with full use of her lungs – she can go as far as her legs will pedal. But even as she shows off the bike, her mind has moved on, “Want to see Then the staff came up with a new solution – a world first. Five my fishing licence?” She moves to her bedroom where she points teams at the Stollery came together to set up the ECMO so that out the best hide-and-seek spot in the house: under her bed. Cheyanne could not only be awake, but that she could be mobile (Inexplicably, in a raucous game that ensues, she hides three times in too. By attaching the machine more securely, they were able to a row in the coat closet.) mobilize her to breathe, eat and play on her own. It was a major As she searches for her fishing license, she uncovers a set of Disney medical breakthrough. character toys. Her favourite is Cinderella. “I get to meet her!” she Next to her bed they set up a play tent. Over the next few says. While she may be visiting the most renowned “magical place on weeks, she worked on floor puzzles, finger paints, and drawings. “For earth,” the magic has been with her for a while. “Magic can happen,” a four-year-old it was incredible to says Dr. Wong, who nominated see how she handled all the [medCheyanne for the role of Cham“It’s got four wheels!” Cheyanne ical interventions],” says Dr. Wong, pion Child, presented by Walmart. is vibrating with enthusiasm director of the pediatric lung “It may not be miraculous but it’s over her new bike. transplant program. “She is such a something incredible when we delightful kid. She made no fuss, work together cooperatively with she just took it in stride: making jokes and playing with us.” the family and patient like we did with Cheyanne.“ Despite the breakthrough mobile machine, the medical staff and “Looking back, it is so amazing what we did together. Every time Amanda and Thomas were keenly aware that no one can live long on we see Cheyanne, we are just so pleased and it happened because the an ECMO machine. But as she had already been referred for a double- whole team shared the same values, mission, and commitment. Cheylung and heart transplant, the team simply had to wait. anne is an example of not just how clever the doctors are. It is really a Almost eight weeks after she collapsed, doctors called Amanda and story of how much endurance Cheyanne and her family have.” Thomas to the hospital for an emergency meeting. “Every time we Together, the team saved Cheyanne’s life. Now she’ll spend received these calls, we worried,” says Amanda, who was also three this next year representing all the kids at the Stollery who may months pregnant and suffering from debilitating morning sickness. not be able to travel but have spirits like Cheyanne’s: they are “When they told us that a donor had been found, we didn’t hear pure inspiration. 18

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10/28/13 5:19:07 PM


GROUP dynamics

The

Renal Deal BY Tricia Radison

Kids with kidney disease and their families benefit from the support and care of a dedicated team

Photo provided by: Alberta Health Services

P

FULL CIRCLE: Jason Brook, 13, experienced all aspects of the Stollery’s renal program.

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ediatric nephrology is a

medical specialty that focuses on the kidney. Children who see pediatric nephrologists may have a disease affecting the kidneys and how they function (filtering wastes, producing urine or controlling blood pressure) or they may suffer from other diseases, such as diabetes, that affect the kidneys. Some of the patients followed by the Stollery Children’s Hospital’s pediatric nephrology face a range of complicated issues that accompany kidney disease and its treatment, up to and including dialysis and kidney transplants. At each stage of their journey – diagnosis, treatment, pre-dialysis, dialysis, transplant and post-transplant – the pediatric nephrology team is there to provide care and support, helping children and their families through a challenging journey every step of the way. Jason Brook of Bonnyville is a 13-year-old who is very familiar with the Stollery’s pediatric nephrology and is regularly monitored in the transplant follow-up clinic, one of several different renal clinics at the Stollery. One of approximately only 2,000 people on the planet born with a rare genetic disease called cystinosis, Jason, accompanied by his mom Tanya Moroko, has been a regular visitor to the department since he was diagnosed at the age of one. “It was pretty stressful finding out he had such a rare metabolic disorder,” recalls Tanya. “We were very scared, not knowing how to deal with it and which direction it was going to move in.” Ever since his diagnosis, Jason and his family have regularly made the three-hour trip to Edmonton so pediatric nephrology could monitor his kidneys. In fact most patients with this condition need a checkup at least every three months. That quarterly schedule is particularly difficult for families who live outside of Edmonton. F a l l 2 0 1 3 | HEROES

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Photo provided by: Alberta Health Services

“Our catchment is northern Alberta, northern B.C., Saskatchewan, to expect when a child is living with and managing kidney disease. During Nunavut and the Northwest Territories,”says Phyllis Theberge, RN, in visits to the clinic, the nurses answer questions, help families access resourpediatric nephrology. “Distance poses an issue so our job is to provide ces and ensure that children are monitored in a variety of ways. support by phone.” “We look at their lab work (like blood test reports) but also at their Phyllis and her colleague, Jennifer Meikle, are registered nurses who quality of life. We make sure the child is not too tired and still getting work with all children and families who are seen by pediatric nephrol- adequate nutrition, because children with significant impairment to kidogy for investigation and treatment ney function are tired and don’t feel of kidney (renal) disease. A small like eating because of the build-up It’s not just about lab work but also number of the patients have sigof toxins that the kidneys normally quality of life. The team wants each nificant disease and progress into remove,” says Phyllis. child to live a normal life. renal failure or deteriorate to endFor Jason, the pre-dialysis stage stage renal failure. The nurses parincluded surgery to insert a gastrticipate in the clinic’s goal of providing care, education and support to ostomy tube (or G-tube). Inserted early in his disease, the tube delivers prevent or slow down kidney damage and to help the children live as much-needed nutrition directly to his stomach. It’s literally been a lifenormal lives as possible. To that end they coordinate with other pedi- saver, but that doesn’t mean it hasn’t also been a challenge. atric nephrology team members including a dietician, a social worker “He’s been on a special diet for 12 years and that’s a lot of work,” says and the medical specialist, the pediatric nephrologist. Tanya. “He has to be hooked up to special equipment all night and it Part of the role for the entire team is to help families understand what makes travelling very difficult.” 20

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10/28/13 5:21:10 PM


Photo provided by: Alberta Health Services

Continued Relationship: Even though Jason’s transplant was successful, he still visits the Stollery nephrology clinics with his mother Tanya Moroko regularly for check-ups. In the early stages of Jason’s diagnosis, Tanya obviously had a lot of questions and concerns, but she says the support she received from the pediatric nephrology team helped make the process easier. “Without them, I don’t know where we would be today. They were able to answer all our questions and when we had problems - like prescriptions that we couldn’t get covered through our insurance - they went above and beyond to find a program to help take that financial burden off us. The dieticians were helpful too, and we were put in contact with a social worker with relevant experience,” she says. For those children who reach end-stage renal failure, the pediatric nephrology team tries to refer them for transplant well before dialysis is required. Research has shown that transplant, while not a cure, is the best treatment for children; there are more complications with dialysis and the risk of dying early is higher than with a transplant. Children also grow better and feel better if they receive a transplant. Finally, dialysis adds to the stress of both child and family. Jason was almost 11 when dialysis became necessary. Without a suitable match for a donated kidney from family or friends, he was S TO L L E RY K I D S. C O M

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put on home dialysis while waiting for a kidney from a suitable deceased donor. “That was very rough for us,” remembers Tanya. “It was triple the work at home, and Jason didn’t have his freedom; he had to be home at a certain time every evening so we could make sure the dialysis was finished in time for him to go to school in the morning.” This was Jason’s life on dialysis and it would be until he received a kidney transplant. That’s where Leasa Sulz comes in. Leasa is the transplant coordinator in pediatric nephrology. Children are referred for transplants at different stages, depending on the disease and how well they’re doing but not every child gets a transplant right away. Some children stabilize, in which case the policy is to watch and wait. “We want to get the most out of their own kidneys before we transplant them because there are risks of infections and immunosuppression side effects,” says Leasa. Before receiving a transplant, children need to go through about six months of tests. The first visit to Leasa includes a one-and-a-half-hour class for the family that covers the risks and benefits of transplant and provides an opportunity to ask questions. Then there is blood work, X-rays and consultations with a heart specialist, infectious disease specialist, psychiatrist, neuropsychologist and a transplant surgeon. The goals are to ensure that the child is as healthy as possible going into surgery and that the pediatric nephrology team knows the risks of complications for each patient. All these visits are important for a successful transplant but they can also add another level of financial burden for families that have to travel to Edmonton. To help alleviate this, pediatric nephrology tries to coordinate visits to occur in one trip whenever possible. After almost two and a half years hooked up to a dialysis machine every night, Jason finally received a kidney transplant on July 7, 2013. “It was a very exciting day for all of us,” says Tanya. But along with the joy came significant concerns. “You can hear everybody else’s stories but you don’t know what it is going to be like. We worried about rejection and infection, and the surgery itself was scary. But we were very excited, knowing that the positives were going to outweigh the negatives.” Tanya says the fact that Jason had known the pediatric nephrology team for almost his entire life made a huge difference in the entire process. He had developed relationships with nurses, doctors and the other members of the team. “He knew that the doctors that were going to be taking care of him were pulling for him,” says Tanya. The average hospital stay for a transplant is 10 days to two weeks, but the child must stay in Edmonton for at least three months, longer if there are complications. During the first three months, the child and parent visit the clinic frequently – up to three times a week – to learn proper post-transplant care, complications to watch for, how to take medications and side effects of medications. There are also frequent formal visits to the nephrologist as well as many informal visits to the rest of the department members who are always eager to catch up with former patients. Six to nine months after transplant, children return about every three months, with blood work done monthly, and more frequent visits if any problems arise. They will continue to be regular visitors until they “graduate” into the adult care world. Today Jason is doing “magnificently” with his new kidney and his health is the best it’s been in years, says his mom. She’s grateful he had such a caring team behind him through his journey and says that words cannot describe how thankful she is to the entire pediatric nephrology team. “The quality of care has been excellent. The doctor-patient relationship is very open and relaxed. They become a part of your life, like one big happy family, and it’s nice to know that they are there for us,” says Tanya. F A L L 2 0 1 3 | HEROES

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alumni files

All photos submitted by Adomako-Ansah family

BY Scott Rollans

NEVER FORGOTTEN: David Adomako-Ansah’s twin sister Sarah still watches his YouTube videos daily.

Heart and Soul

David Adomako-Ansah lives on through his legacy If you were to ask me if I could handle a situation like this before I was diagnosed with lupus, I would’ve told you the exact same answer: NO. It’s not until you’re faced with such a challenge that you eventually say to yourself, ‘I’m gonna fight this,’ and then you just find a way to do that. – David Adomako-Ansah The sudden death of a young person is always a tragedy. That was certainly the case with David Adomako-Ansah, who struggled with his health for years before he died last June at age 23, just as life finally seemed to be opening up for him. Yet, along with the deep sense of loss, David left behind a legacy of hope and inspiration. A proud and tireless ambassador for the Stollery Children’s Hospital Foundation, he had a generous spirit and broad smile that 22

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touched the heart of an entire community. When Dr. Holger Buchholz first met David in 2007, he couldn’t have guessed the role the young man would eventually play in his own life. About a year earlier, David had been diagnosed with severe lupus, and he now found himself in congestive heart failure at the age of 17. “I will never forget – his legs were so skinny,” Buchholz recalls. “He had these sports shoes that looked about 10 sizes too big for him.” David’s frail health made him ineligible for a heart transplant. Instead, Buchholz installed a Berlin heart, an external assist device that he hoped would give David’s body a chance to recover. Even with the Berlin heart, David faced overwhelming odds. “After the operation, he only weighed 35 kilograms,” says Buchholz. “He had to learn to speak again and to walk again.” Fortunately, David was rarely alone during his recovery. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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“His hospital room became the cool spot to hang out,” recalls his twin David eventually spent 22 months with the device and made history by sister Sarah Adomako-Ansah. “Sometimes he would have up to 15 friends becoming the first patient in North America to ever go home on a Berlin doing physiotherapy with him. People would be on the treadmill beside heart. During that time he launched Dunk on Disease, a charity basketball him. We’d do weights and play basketball. My brother just made everything tournament that has since raised thousands of dollars for the Foundation. so much fun.” He also contributed many hours of his own time, visiting other patients in So when David celebrated his 18th birthday in the hospital in 2007, the the hospital and appearing with Dr. Buchholz at speaking engagements. party came to him. “We had made big Selvi Sinnadurai, nurse coordinator plans for our 18th birthday,” Sarah for the Stollery’s Ventricular Assist “The moment he came into a room, says. “But, because he was hooked up Device Program, was continually you could feel the energy. He made to so many things, there was no way I struck by David’s impulse to help everyone feel better, even if he didn’t could take him to the bar.” Instead, the others. “Usually, when people are feel good himself.” twins decide to have a small gathering sick – and this is understandable – in the hospital room and sent out they’re focused on themselves, and invitations to a handful of their closest friends. “But it exploded into this their recovery,” she says. “But he still made a difference in the community, massive party,” Sarah smiles. “People just kept showing up with love, and and that was very important to him.” cards, and well wishes. It ended up being close to 200 people.” Even so, Dr. Buchholz remembers another side to his patient. “I always found him as a little boy. I think that’s why he touched so many people’s There were quite a few challenges on the Berlin heart. When my blood hearts – you were always a little afraid that you would break him if you pressure would rise, or if there was a kink in the tube, there would be touched him too hard.” To Dr. Buchholz, this only made David’s charisma a loud, annoying beep. It always seemed to beep at the wrong times, more remarkable. “The moment he came into a room, you could feel the like when I would run to catch a bus, or when an attractive young lady energy. He made everyone feel better, even if he didn’t feel good himself.” looked my way. David never put his needs first, no matter how sick he was, says – David Adomako-Ansah Dr. Buchholz. “I always knew when David really needed me to visit him. S T O LL E R Y K I D S . C O M

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He would text me, ‘Well, by the way, my mom cooked some food for you. It’s in my room. Could you pick it up?’” Fortunately, by the end of 2008, David’s condition had improved enough that he was placed on the list for a heart transplant. In February 2009, the call came. Since the transplant … I’m free to do all the things I used to and more. I’m free to be David again. – David Adomako-Ansah

LEFT UNFINISHED: David’s goal was to become a television journalist. He died just one month after graduating from NAIT.

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With a new lease on life, David returned to pursuing his dream of becoming a television journalist. “I mean this in the most loving possible way,” Sarah says, “He loved the sound of his own voice.” David enrolled in NAIT’s television program, eventually working as an intern (and winning hearts) at CTV News Edmonton. “A newsroom is full of A-type personalities,” says CTV News Director Dan Kobe. “It can be difficult for an intern to come in and fit in. David fit in perfectly. He was eager to do whatever we asked – it didn’t matter how big or small the task was, he accepted everything with energy, enthusiasm and a big smile.” Sarah laughs when she describes a favourite YouTube video, in which David gamely attempts to do the weather during a guest spot on CTV Morning Live. “I think I watch that once a day.”

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David graduated from NAIT this past May, eager to start his career. Then, the following month – just like that – he was gone. Sarah cherishes her final memories with her twin brother. “The day before he passed away, we were at our cousin’s wedding. He was just partying it up. He and I danced with our little cousins, and ate way too much food and way too much cake. And the day that he did pass away, we were at a friend’s going-away party.” “I truly think that he saw all of the most important people in his life in the last 48 hours of his life. He spent those two days being so happy, and loving where he was and who he was with.” Dr. Buchholz says David leaves behind a proud legacy. “David is one of the reasons the program has so much support today in the community, outside the hospital and inside also.” For her part, Sarah hopes to carry David’s “Dunk on Disease” fundraiser forward. In part to give back to the hospital where David spent so much time, but also to keep his spirit alive in her own life. Last summer as she set up her classroom for her first year as an elementary school teacher, she remembered a promise David made to help her with the task. “I was like, ‘You said you’d be here, and now you’re not.’ But he is always there. He’s always watching, and always looking out for me, and everyone. He’s everyone’s angel.” Don’t worry about what others say, just give everything your all, because you just never know. I think that in situations like mine, and with every successful journey, you need the support of the people close to you in order for you to start believing in yourself. – David Adomako-Ansah

Meet David Adomako-Ansah If you never had the good fortune to meet David Adomako-Ansah, the Internet offers some vivid glimpses into who he was and what he was like. Here are some great places to start: • A Glimpse Into My Past sites.google.com/site/dunkondisease/glimpse On the web page David created for his “Dunk on Disease” fundraiser, he writes with humour and energy about his own health struggles. The quotes we used in the main article come from this bio. • David Adomako-Ansah tinyurl.com/adomako-ansah This 20-minute YouTube playlist combines the following four compelling YouTube videos featuring David Adomako-Ansah. • Top 20 under 30 youtu.be/8K8SzI5bXTQ In this short overview for Shaw TV’s “Edmonton’s Top 20 Under 30” awards, David’s twin sister Sarah describes her brother’s accomplishments and the bond she still feels with him. • A tribute to David Adomako-Ansah youtu.be/wg3PO7XhfNA A cross-section of David’s friends convey their heartfelt personal recollections of his personality, and reflect on his loss. • My Day at CTV Morning Live Edmonton youtu.be/BRyAq7lvip4 After an inspiring interview on a local morning show, David takes a playful stab at being an on-air meteorologist and traffic reporter. • Citytv remembers David Adomako-Ansah youtu.be/JumfY0rR8Ac Edmonton’s Citytv pays tribute to David by re-posting a memorable interview with David during his time with the Berlin heart.

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Illustration: HEFF O’Reilly

feature HERO

Perfect

Timing BY Mifi Purvis

One couple’s generosity buys a new system that AIMS to make anesthesia safer and more efficient

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T

iming is everything. Dr. John Koller was

looking for the right time to bring in a new computer system that could improve pre-operative care, patient safety, efficiency and post-anesthesia care for even the smallest patients at the Stollery Children’s Hospital. With his team, Dr. Koller, head of pediatric anesthesiology, had identified the need for a better information management system to replace the one they had been using for years: hand-written paper charts. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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captures information about anesthesia that was once unknown to even the anesthesiologist. “We don’t always hear about what happens the next day,” he says. “Now we have a means to capture information about later effects.” Obviously, all this matters very much to the worried parents whose child is on the operating table at the moment. But at a macro level, the system will also better serve other current and future patients, too. AIMS can help identify emerging cohorts. The system builds a database as it goes and has the ability to compare data against systems at other facilities. What an anesthesiologist might encounter once in a career and consider a one-off, AIMS can identify as a rare but known circumstance and help other anesthesiologists prepare for it. With the amount of data it can amass, AIMS allows researchers to create both retrospective and prospective studies to look at the efficacy of new drugs alone or in combination. It allows the system to look at the habits of a single anesthesiologist, or those of a group. AIMS was created in the United States as a means to capture actions that hospitals could later bill to private insurers. While this is of little concern in Canada, AIMS helps local health economists identify means to make anesthesiology more efficient by looking at the drugs used or the manner in which anesthesiologists use them on the tiniest patients. AIMS has been around long enough – two decades – that the system is very robust and almost completely bug-free, Dr. Koller says. But at a hospital the size of the Stollery, serving the patient population that it does, it’s pricey. “The Foundation was aware of our need,” he says. “It’s a good-sized project that needed a substantial donation to match.” That’s where Reinhard and Elisabeth Mühlenfeld came in. The Edmonton couple donated $1 million to the Stollery Children’s Hospital Foundation. They did not earmark their donation for anything specific, but the care of children is important to the family. “Children are so vulnerable and special,” Elisabeth says. “We wanted to make sure that we were helping them.” The Mühlenfelds came to Canada in 1975 with their young chil“The timing was right to acquire AIMS,” he says, which stands for Anesthesia Information Management System. “We were in a good dren. From Germany by way of England, the Mühlenfelds never space in terms of growth and redevelopment of the pediatric operat- planned to throw down an anchor in Alberta. Reinhard was hired ing rooms.” The new system would roughly coincide with the redevel- for a limited project: building a feed mill in rural Alberta. But when that project came to an end, another one presented and the family opment of the operating rooms scheduled to begin very soon. stayed in Edmonton. Eventually While a new software system Reinhard bought a feed mill and might not seem as glamorous as a Once it’s up and running, AIMS will new imaging device, new drug or hired the staff to run it. Other mills make a difference in the lives and perhaps a new surgical technique, followed. health of Children in Alberta for many it’s definitely the bedrock that On his travels in rural Alberta, will help doctors maximize the Reinhard came across an interestyears to come. potential of any these and AIMS ing fact. “There was no one manuwill bring a number of positive impacts. Most obviously, the system facturing pet food in the province,” he says. Once he had identified impacts patient care. It allows anesthesiologists to quickly access a the niche market, he started making pet food in 1985. Nearly 30 years patient’s records from previous anesthetics and more readily identi- later, Champion Pet Foods is known for making cat and dog food fies reactions or potential problems in order to avoid added stress to a of the highest quality from Alberta ingredients. Champion has two vulnerable patient. “We can easily go back and see what the last anes- plants and 225 employees and its pet food is sold around the world. thesiologist did and repeat success or avoid unintended reactions,” The couple wanted to share their good fortune by supporting sick Dr. Koller says. More importantly, AIMS lets the team do this without children at home in Alberta. The Mühlenfelds came along at the perlosing focus on the patient. “In a cardiac surgery on a very sick pediat- fect time. The AIMS project needed momentum to get off the ground ric patient,” Dr. Koller explains, “an anesthesiologist can make 1,000 and the couple readily agreed to allow their funds to go toward this to 2,000 decisions in one eight-hour surgery.” legacy project. At the push of a button, AIMS, an easy-to-use Windows-based pro“AIMS is a big, ground-breaking project that needed a substantial gram, allows doctors to look up new protocols or review protocols in donation to make it possible,” Dr. Koller says. He is excited about the place for a patient with a rare condition that a doctor might not have potential benefit to patients and says that when it’s up and running encountered before in practice. “AIMS offers hugely enhanced patient soon, AIMS will make a difference in the lives and health of children safety in the pre- and post-op phases,” Dr. Koller says. The system in Alberta for many years to come. S TO L L E RY K I D S. C O M

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ones to watch

Of Curiosity and Kidneys BY Deepti Babu

Two doctors take different paths to converge on a specialty that helps patients with renal disease

D

r. Catherine Morgan and Dr. Todd Alexander

are Stollery pediatric nephrologists with divergent clinical and research interests. But they have key characteristics in common: inquisitiveness, persistence, and a desire to better learn how the kidney works to improve the health of children and adults with renal disease. According to Dr. Morgan and Dr. Alexander, spending time increasing knowledge of how the kidney and its components work – at the level of small details – is the key to bettering our ability to treat renal diseases. It turns out that current understanding of the kidney’s inner workings is evolving. As Dr. Alexander says, “We don’t fully understand the science. Doing that is the only way to help people.” Diseases of the renal system are becoming increasingly complex and challenging to medically manage, so it’s important to invest resources in the field. And the presence of Dr. Morgan and Dr. Alexander at the Stollery represents an investment in patients and, in the bigger picture, establishes them as leaders in the field. “I loved scientific inquiry and academics,” Dr. Morgan explains of her early interests, “and I had a strong desire to answer questions.” That innate curiosity led to a passion for medicine in both of them. Consider for a minute their years invested in becoming expert. Dr. Morgan has her medical degree, pediatrics residency and nephrology 28

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fellowship, and a master’s degree in clinical epidemiology; Dr. Alexander has his medical degree, pediatrics residency and nephrology fellowship, doctorate degree and post-doctorate fellowship. And consider that each recognized there was a limited understanding of kidney physiology – something with serious long-term consequences to patients with kidney disease worldwide – before they even began their training. Instead of daunting them, that fact drove each, independent of the other, to become part of the solution, improving basic understanding of the kidney, in both health and disease. Today, they help deliver solutions to the Stollery’s renal patients every day. Dr. Morgan always had an interest in pediatrics, along with the physiology of the cardiac and renal systems. In much of her research today, she combines these interests to help learn how problems with the heart relate to problems with the kidney. Dr. Morgan currently has a large research study that is looking at very young children who have had open-heart surgery and the impact of that to their kidneys when they are older. And what better place than the Stollery for this study? “It’s important that this research involves babies who have cardiac surgery, since that is such a strength of the Stollery,” Dr. Morgan says. Through her study, Dr. Morgan hopes to better understand how kidney injury during intensive care might be a risk factor for chronic kidney disease and related conditions (such as high blood pressure). S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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Photos: Laughing Dog Photography Inc.

CURE SEEKERS: Dr. Catherine Morgan and Dr. Todd Alexander are looking at different ways to treat kidney disease.

She suspects that a high number of children who have heart surgery its findings were reported in Edmonton Journal and The Globe and Mail could also be at risk for kidney complications, and hopes to make in 2012. “People were interested. It was a neat molecular explanation a difference if this is proven. As she puts it, “I have a strong sense of for why when you eat more sodium you lose more calcium, which can curiosity, and a desire to really change outcomes.” have major health effects,” explains Dr. Alexander. Dr. Alexander echoes that same desire. He explains, “Through Being so specialized in their field means that Dr. Morgan and basic research, I hope I can make Dr. Alexander have a fairly small things better for kids and adults group of colleagues, even across “Through basic research,” with kidney disease, and other Canada and the world. But they Dr. Alexander says, “I hope I can diseases as well.” He knew there both note that over time there has make things better for kids and were basic physiological questions been more collaboration than beadults with kidney disease.” in nephrology that needed to be fore. “There’s a really strong group asked, and felt some answers could of researchers in pediatric nephrolbe in something called ion homeostasis, which is the complex, nat- ogy working together, which really didn’t happen to the same extent ural process in the body that keeps everything balanced at the small before,” says Dr. Morgan. molecule level. A strong point for Stollery specialists is their ability to engage others Dr. Alexander’s research study on mice and possum kidney cells across Canada and the world to help patients, creating a wide – yet found a small molecule that controls the movement of sodium ions is personal – network that yields more power to make positive changes likely the same one that controls the movement of calcium ions. The to medical practice. Neither Dr. Morgan nor Dr. Alexander wants to discovery by his research team helps to explain why eating too much make clinical changes rashly, without the proper studies beforehand salt leads to the body losing too much calcium. This can increase offering sound rationale. But fortunately, it can be easier to get there one’s risk for kidney stones and osteoporosis – two health problems when you’re already at the forefront, leading an international network that impact many people worldwide. The study gained traction; of colleagues that have the same goals. S TO L L E RY K I D S. C O M

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Illustration: CINDY REVELL

giving guide

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Don’t Make a (Charitable)

Mistake BY Mike Skrypnek

If you plan to make a lasting gift of the money that you worked so hard to earn, make sure it counts 30

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I

met my good friend, Glen, for coffee the

Contemplating charitable giving requires contemplating your legacy. other day. We were sitting at a ridiculously small table in a crowded I direct people to view their legacy through the eyes of their grandcafé discussing his recent experience donating money to charity. children. Envisioning their vantage point as beneficiaries of what we do He mentioned that a month prior, he was golfing with a friend today shapes the impact of our giving. who supported a charity that he thought could use some more help. 3. You aren’t aware that we’re all involuntary philanthropists. Inspired, Glen decided he wanted to make a charitable gift so he met Webster’s Dictionary defines a philanthropist as “a benevolent with his financial advisor and they figured he could sell some stock in supporter of human beings and human welfare.” Well, what is a a company he’d held for a while, then donate some of the proceeds person who gives up half of his income and approximately one-quarand gain a tax credit. He was pleased, as he was told that the charitable ter of his capital gains to support the general welfare of his country? contribution tax credit would help offset the capital gains taxes realized Taxpayers are involuntary philanthropists! You probably believe you’d on the sale. be more effective directing your wealth, and guess what? The governAfter he made his donation, Glen told me that he found out some ment generally agrees. The government incentivizes voluntary philanthings about the charity. He said the charity actually used his funds thropists. There is tax-free gifting of securities and healthy tax credits to pay its office rent – the month before it was evicted! He lamented for charitable donations. that he should have done more homework. He genuinely wanted to 4. You fail to understand how you can make your gift go further. support the cause, but didn’t realize the organization itself was in such Without proper advice or guidance, people like my friend Glen might dire straits. think they can do less for charity than they are actually capable of. Hearing that, I gulped back my espresso and tried to reassure him, Sitting down with an expert who understands planned giving could although I understood that instances like that happen quite often. have helped him. There are many tools and tactics that can be used I then shared some of the glaring, but typical mistakes that made his to leverage surplus wealth to give more and pay less tax. It requires philanthropic gift count for less direction from an expert advisor to than it should have. determine the best-suited strategies Knowledge of the charity’s financial I told him that, first of all, he for a family. circumstances would have shone could have avoided all his capital 5. You focus on the wrong meta light on the futility of my friend’s gains tax by donating the shares rics. Investigating a charity on the charitable gift. directly instead of selling them. basis of its expense ratio alone, or His advisor should have been able who the chair of the board is, isn’t to provide him with that much information. Next, I mentioned that enough for a good decision. Asking about the success of the charity in there are a number of resources that he could have used to do just a accomplishing its mission will provide better insight. Information itself little more homework on the charity. A little knowledge of its basic is not wisdom, and numbers are not all key metrics. financial circumstances, found in the Canada Revenue Agency charity 6. You make the wrong gift at the wrong time. Deciding to make an information website, could have shone a light on the impact versus impactful gift is the first step. The second is to maximize the impact the futility of his gift. both for the charity you wish to support, and for your financial circumAs the café emptied, we talked about how he might maximize his stances. Reviewing your financial, tax and estate planning will identify next gift. I think Glen went away with a pretty sound understanding of opportunities in maximizing your gift’s impact. Do you give now or the unfortunately common mistakes Canadians make when they give give through your estate? How can you make your current surplus cash their hard-earned cash to charities. In fact, I have seen these happen so flow do more? There are ways to give multiples of what would otheroften, I incorporated the top seven of them into a special report. wise be a small annual gift. Review your personal circumstances and Of course, none of this could rectify Glen’s experience, but he now then consult a professional advisor. knows his options and he is still committed to a larger, meaningful 7. You don’t seek professional help. You don’t have to become a legacy gift. specialist in areas of your life that you don’t know. Hey, you don’t do self-dentistry. Establishing a relationship with a professional who is The Top 7 Mistakes in Giving an expert in planned giving and client-centred is crucial to successful 1. You don’t know that your RRSP or RRIF will be your most-taxed legacy planning. If your advisor starts conversations with “What is asset, eventually. Most people I speak to do not realize their registered important to you?” or “Where do you want to make a difference?” plans, while excellent lifetime tax sheltered savings vehicles, are prob- you’re on the right path. ably the worst way to pass wealth to their heirs. When I explain to them that, when the last remaining spouse dies, the Mike Skrypnek, author of value of their registered plans is considered disposed of and realized as Philanthropy; An Inspired Process, is income in their final tax return, they are surprised. And when I explain an expert in guiding families in the that a RRSP or RRIF worth $500,000 means that roughly $200,000 will journey to make a bigger impact in go to taxes, they are aghast. their lifetimes and beyond. This is the 2. You don’t consider your legacy. My grandmother was a beautifirst of a four-part series. Contact Mike ful kind-hearted woman and when she died at 97 last year, her at fitnetworks@shaw.ca. great-grandchildren knew her well. They knew what she stood for. S TO L L E RY K I D S. C O M

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Photo: Aaron Pedersen, 3Ten photo

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NEVER TOO EARLY: At the age of 20, Tatyanna Murray is one of the Stollery’s younger donors. She knows first-hand the life-changing work that goes on at the hospital. 32

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BY Colleen Biondi

why i donate

Emergency

Rescue

A former Stollery patient, just out of her teens, has become one of the Foundation’s younger donors

Photo: Aaron Pedersen, 3Ten photo

I

n many ways, Tatyanna Murray is a typical

20-year-old. She works, volunteers, enjoys time with friends and rides horses on her family’s acreage near Red Deer. But when she made a bundle of money this past spring as an emergency medical responder (EMR) on the rigs in Fort McMurray, she did something quite atypical. She donated $2,500 to the Stollery Children’s Hospital Foundation, a charity very close – quite literally – to her heart. Her connection to the hospital started unexpectedly five years ago. Tatyanna had a busy schedule like many teens her age. At school, she was a member of the Link Crew, a group helping younger students stay strong, resilient and away from negative influences. She was a nationallevel gymnast in double mini trampoline, spun the rifles, sabres and flags with the Red Deer Royals Marching Show Band, lifeguarded and taught swimming lessons. Then, her world took an odd turn. She started having seizures, often blacking out and feeling shaky afterwards. Her doctor in Red Deer said this was definitely not normal for a healthy teen and he referred her to the Stollery. There, she was tested for a full year – she wore a 24/7 portable heart monitor for six months, she had numerous electrocardiograms (ECGs), stress tests on the treadmill and an MRI. Finally, the results were in. She had sinus heart arrhythmia, a condition where the heart beats dangerously slow (in Tatyanna’s case, 22 to 48 beats per minute; the average is 70 to 120 beats). Her heart also skipped a beat occasionally or took on an extra one. Her cardiologist, Dr. Michal Kantoch, prescribed Florinef – a fludrocortisone product that increases her heartbeat to a safer level. These days, she can’t drink coffee, and Red Bull is out even when she’s doing shift work. Caffeine can raise the heartbeat too quickly in people who take this medication. But the Florinef has significantly reduced her symptoms and she has not had a seizure in six months. “I am doing a lot better,” she says. “The medication is really great.” Along with the drugs, she tries to keep her stress at a low level, gets good exercise, eats well and follows up with her cardiology team every three to six months. Tatyanna also has hypoglycemia, a common side condition. To manage this, she takes omega 3-6-9 supplements, vitamins C and D and a multivitamin. She eats frequently to keep her sugars even and tests her blood glucose on a regular basis. The medical help and emotional support she has received from the Stollery has made it possible for Tatyanna to lead a full life and to purS TO L L E RY K I D S. C O M

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sue her dream, which she describes as “helping people and being there for people.” She intends to advance her emergency response training in January to become an emergency medical technician and, eventually, a paramedic. “Death is inevitable,” she says. “But if I can be that one person who prolongs your life, that is what makes me feel good.” But it is not all work and no play for this young woman, who is very aware she has been given a second chance. She is a volunteer firefighter in Penhold, she loves to play paintball, ride her dirt bike and snowboard. She enjoys shooting guns, often with her dad, and looks forward to hunting season. She admits to enjoying more “guy-type activities” than stereotypically girly ones. “I am a bit of a tomboy.” She plans to donate to the Foundation as her bank account allows. The Foundation has been very receptive; several staff came to Red Deer to meet her for coffee and to thank her, in person, for her generous gesture. “I believe I am one of the younger donors,” she says. Tatyanna hopes her donation will inspire other young people to donate to the Foundation. “I saw a lot of sick children at the Stollery and it hit home – I was one of them. Not many people know how much research is needed to do the work there and how much money is needed to support that research.” For now, she is concentrating on being well. She credits her family – her mother, father and 15-year-old sister, Mickayla – for being there for her throughout this journey. “I’m not sure I would’ve gotten through without them.” Four-legged friends, such as the family’s two minidonkeys (they scare away the coyotes, explains Tatyanna), a goat, the horses and four dogs, have also weighed in with the kind of unique support that only treasured animals can. “Being sick has made me appreciate life a lot more. Now I can do what I want to and enjoy myself without worrying about having an episode with my heart,” she says. “Everyone takes life for granted from time to time. It often takes going through an experience like this to value life.” And valuing life is an expression of her donation. “The kids can use any help, even a small donation,” says Tatyanna. “Every little bit helps.”

Fund the Foundation: If you’re interested in contributing to the Stollery Children’s Hospital Foundation, visit stollerykids.com or contact Katherine Captain at 780-431-4605 to donate. F A L L 2 0 1 3 | HEROES

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corporate HERO BY Michelle Lindstrom

Support

You Can Bank On Funding an anxiety-targeted program for youth is a win-win for RBC and the Foundation

T

he business elements of the Royal Bank of

Canada (RBC) include some impressive facts that its leaders can be proud of. It is Canada’s largest bank (based on assets and market capitalization); it employs 80,000 people (more than half in Canada); and it serves more than 15 million clients via offices in Canada, the United States and 44 other countries. One of the 15 million clients RBC serves, through program funding, is the Stollery Children’s Hospital Foundation, with a relationship dating back to 1991. Currently, RBC has four pillar projects, each with a different community enhancement focus. There’s the Blue Water Project, a 10-year, $50-million commitment to urban water, the RBC After School Project, in support of the best-of-the-best after school programs across the country, and the RBC Emerging Artist Project, which supports

programs that bridge the gap between aspiring artists hoping to launch a professional career. But it’s the fourth pillar that recently reconnected RBC with the Foundation; the RBC Children’s Mental Health Project. “When we announced our children’s mental health focus in 2008, we were in constant dialogue with the Stollery looking for an appropriate program that we could fund,” says Jerilynn Daniels, RBC’s senior manager, community investments and marketing, and public affairs. RBC’s target is early intervention, prevention and anti-stigma programs for youth. When Dr. Mandi Newton heard that RBC was looking to support children’s mental health, she knew she had the perfect project to fit the RBC mandate. Dr. Newton is an assistant professor in pediatrics in the faculty of medicine and dentistry and is also a clinician scientist in child

Photo: Alistair Henning

BREATHE DEEP: RBC’s $500,000 donation to the BREATHE program is the company’s largest ever to the Foundation.

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10/28/13 5:33:32 PM


Photo: Alistair Henning

and adolescent psychiatry research at the Stollery Children’s Hospital. The first proposal for BREATHE was built on the funding Dr. Newton “From the work that I do in the emergency department here in initially received from the Canadian Institute of Health Research (CIHR), Alberta, I know anxiety is one of the most common reasons why kids which got the ball rolling. “The RBC investment has allowed us to come in,” Dr. Newton says, citing common complaints from youth create our dream program for youth and to get feedback from youth,” and their parents include headaches, stomach aches, frequent/contin- Dr. Newton says. Her team is currently making final tweaks based on ual crying, and not wanting to go to school. She and her team saw the comments from youth and industry professionals who are testing the need for a program to target the prevalent issue of anxiety in youth, site. The next step is an 18-month initial evaluation beginning in Januwhich is something that tends to continue into adulthood if left ary 2014, where 80 recruited youth – 13- to 17-year-olds in Edmonton untreated and potentially carries other issues with it including depres- and Halifax, which is home to a partner emergency department – will sion and substance abuse. use the online tool as their therapy. After that, Dr. Newton hopes to An online contest was recently held to rename Dr. Newton’s implement a larger and longer study across the country. program from “Wired!” (as it was called for the purposes of funding Mike House, the Stollery Children’s Hospital Foundation’s president applications) to “BREATHE,” a and CEO, praises the great work teen-supplied winning acronym for RBC has done to keep the connec“The RBC investment has allowed Being Real, Easing Anxiety – Tools tion strong between the two organus to create our dream program for Helping Electronically. Dr. Newton izations. “There will be failures and youth and to get feedback from youth,” successes and RBC is right there notes that BREATHE is a cognitive behavioural therapy (CBT), which with us all along the way,” he says. Dr. Newton says. helps patients understand how “I just find that RBC’s staff really their thoughts and feelings lead to what they do, and it’s proven to be get engaged in the community, and in a way that makes it easy for us effective when helping youth. to build relationships throughout the course of the year; and not just “For most cognitive behavioural therapies, kids traditionally go into an when we’re asking for support.” office and see a therapist,” Dr. Newton says. “So, we’ve created something And this is exactly the kind of relationship and philanthropic work that’s delivered online through the Internet.” A significant challenge that Jerilynn Daniels says RBC wants to provide. “RBC is looking to be was to create a program that was as engaging as having a real person – a a transformational philanthropist, not a transactional philanthropist. therapist – in the office with the youth. This is where RBC comes in. It’s about ensuring the programs that we’re funding are actually making RBC’s five-year, $500,000 total commitment to BREATHE is the a difference in our focus areas.” largest donation it has ever made to the Foundation. This funding It’s a perfect fit, too, as Mike says this style of intentional and involved commitment allowed Dr. Newton’s team to add graphics and vid- giving from RBC is so important for a charity like the Stollery Children’s eos (more expensive elements to websites) that she hopes will be the Hospital Foundation. “When you transform a life, community or prowow-factor needed to grasp the attention of users and make this an gram, RBC gets it. They understand that they were part of the solution engaging CBT tool for youth. and more than just a picture in a newsletter.”

GOOD PARTNERS: Mike House, president and CEO of the Stollery Children’s Hospital Foundation, says RBC’s involved philanthropy is exactly what the Foundation looks for.

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SUPPORT SYSTEM: BREATHE is a cognitive behavioural system therapy offered online for kids with anxiety issues.

F A L L 2 0 1 3 | HEROES

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10/28/13 5:33:57 PM


Children’s Miracle Network ƉĂƌƚŶĞƌƐƌĂŝƐĞĐƌŝƟĐĂůĨƵŶĚƐĨŽƌ local children’s hospitals across ĂŶĂĚĂ͘dŚĞƐĞĨƵŶĚƐƐƵƉƉŽƌƚ ĐƌŝƟĐĂůƌĞƐĞĂƌĐŚ͕ƉƵƌĐŚĂƐĞ ůŝĨĞͲƐĂǀŝŶŐĞƋƵŝƉŵĞŶƚ͕ĂŶĚ ƉƌŽǀŝĚĞĞdžĐĞůůĞŶĐĞŝŶĐĂƌĞĨŽƌ ĐŚŝůĚƌĞŶŝŶŽƵƌĐŽŵŵƵŶŝƚLJ͘ KŶďĞŚĂůĨŽĨƚŚĞĐŚŝůĚƌĞŶ ŝŵƉĂĐƚĞĚďLJLJŽƵƌŐĞŶĞƌŽƵƐ ĐŽŶƚƌŝďƵƟŽŶ͕THANK YOU!

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7/19/13 8:03:10 AM

10/28/13 4:28:42 PM


ca

BY John Hardy

hospital portrait

Once a Nurse Tracy MacDonald, executive director of the Stollery Children’s Hospital, finds that Family-Centred Care appeals to her experience as a clinician that there’s a big difference between the skills, attributes and responsibilities required of a nurse compared to those required of a hospital’s senior administrator. Tracy MacDonald, the upbeat and focused executive director of the Stollery Children’s Hospital, respectfully suggests that they would be wrong. Tracy has extensive experience in both positions and explains that her 10-plus years of clinical experience in various nursing capacities, mostly as an emergency department nurse, is proving to be invaluable in her new role as executive director. “For me it is a natural progression,” explains Tracy. “As an administrator and a leader, I have the tremendous benefit of being able to evaluate and look at the decisions I make through the eyes of a clinician. I still consider myself a nurse in a senior administrative role. It gives me a balanced perspective and it certainly keeps me well-grounded. And that’s so important because the decisions ultimately impact the care of our patients and, invariably, the lives of their families.” Although her credentials in senior executive health care roles over the past 15 years speak for themselves – she was vice president and chief operating officer at the Sault Area Hospital in Northern Ontario, senior administrator for the Kelowna General Hospital in B.C. and vice president and chief nursing executive for the Niagara Health System – the personable and energetic Tracy points out that, as with most other new jobs, there is always a learning curve in the first few months. Tracy officially became the pediatric hospital’s top administrator this past May and has devoted her time to understanding the ins and outs of the Stollery; the work environment, the structures and protocols and, most importantly, meeting the people of the Stollery. “Most people realize that contemporary health care is a very complex system. I have been fortunate to gain solid experience in the various roles that I have had over the years and thankfully over time you get wiser and can put your experience to practice,” Tracy says with confidence and enthusiasm. “Even from outside Alberta, I have known about and admired the work of the Stollery for a long time. Now I feel so privileged to be in this vital role and to have the opportunity to work closely with the highly specialized Stollery staff.” Tracy says she is the type of person who is energized by the work that she does. This has helped during her big move to Edmonton with her husband. “It’s a great feeling S TO L L E RY K I D S. C O M

Photo: Amy Senecal

Most people would probably assume

knowing that I can influence the direction of the Stollery, impact the quality of care and make a positive difference for our patients, their families and our community.” With extensive experience in Canada’s health care system, Tracy underscores one of the nationally respected attributes about the Stollery: “The Stollery is very advanced in its philosophy of Family-Centred Care (FCC),” she says. She calls the FCC approach a stimulating and gratifying aspect of her multi-facetted job. This philosophy respects the important role of the family in a child’s life and as partners in care. At the Stollery, families are vital “The Stollery is very advanced in its members of their child’s philosophy of Family-Centred Care care team. (FCC),” Tracy says. “We actually engage our families and partner with them in most aspects of care delivery at the Stollery,” Tracy explains. Families are involved with the Stollery in capacities that range from providing input on the design of capital projects and planning for ambulatory care to advising on what are the most important items for children in the waiting rooms. “The input and feedback from our families is very valuable,” Tracy says. “It is such a genuine privilege to be working here at the Stollery with our patients and their families, and with the amazing group of staff, physicians and volunteers who contribute everyday to providing quality patient care to our children.” F A L L 2 0 1 3 | HEROES

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3:10 AM

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10/28/13 5:34:41 PM


THE LAST word

BY Jocelyn Regnier

The Perfect Match

C y S a

C o t

Photos: Nicki Wohland

The CN Miracle Match Child Ambassador looks back on her time at the event and looks forward to enjoying her new favourite pastime

T S

My name is Jocelyn Regnier. I’m from Lloydminster, I’m 14 years old, I love sports and I love Justin Bieber. And, I was born with too big of a heart. When I was a baby I went into heart failure because the left side of my heart didn’t work properly. It’s called dilated cardiomyopathy. I eventually got my second heart in Toronto but when my left shoulder started hurting in 2007 I went to the Stollery Children’s Hospital for the first time. They told me that I had coronary heart disease and that I would need another heart. So far my third heart has been the charm. I still have to visit the Stollery every six months, but it’s OK because everyone there is so nice. It’s important that I visit the hospital so that they can check in on how I’m doing. It used to be a lot worse. I used to have to go quite often for IV medicine. That was terrible. They poked me so many times that they had to start putting the IV line in my feet and toes. One time I was so sick with pneumonia that I had to fly to Edmonton on a special airplane. I was really sick and don’t even remember the plane ride. But I’m glad that I could fly there because my grandma told me I needed 38

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help fast. There were even doctors and nurses on the plane with special equipment to make sure I would make it. The worst part was that I had to give up playing hockey. I love hockey so much, but with all the pneumonia I need to be careful with my lungs. I can’t play hockey anymore, but it’s OK because I’m starting to take up golf. This past summer I got the chance to be the Stollery Children’s Hospital Foundation’s Child Ambassador for the CN Miracle Match program. I got to be on TV and CN gave me my very own set of golf clubs. To help me learn the game, Lorie Kane gave me a few tips. So did the CN Future Links junior golfers. I got to stay in Edmonton for the whole CN Canadian Women’s Open golf tournament and I attended the gala and met professional golfers. I want to thank CN for giving me that great opportunity and for raising all that money for the Stollery. I also want to thank everyone who donated during the CN Miracle Match program for helping kids like me get better. Helping children is close to my heart; that’s why when I grow up I want to become a doctor or a nurse so that I can work at a hospital like the Stollery and save kids’ lives. S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

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THANKS FOR HELPING GET SICK KIDS BACK TO PLAYING CN would like to thank everyone who made CN Miracle Match such a resounding success. Thanks to your donations, we were able to help raise $2,700,000 for the Stollery Children’s Hospital Foundation. Special thanks and congratulations to Lydia Ko, champion of the 2013 CN Canadian Women’s Open, and thanks again to all the golfers and volunteers who made this year’s event so memorable. CN is very proud to have helped raise almost $11,000,000 through the program for the benefit of Canadian children’s health organizations over the past 8 years, helping our kids in need get the best possible care.

Claude Mongeau, President and CEO, CN Dr. Susan Gilmour, Chair, Department of Pediatrics at the Stollery Children’s Hospital Lorie Kane, LPGA player and CN Miracle Match Ambassador Jocelyn Regnier, CN Miracle Match Child Ambassador Hugh Bolton, Member of the Board of Directors and Chair of the Strategic Planning Committee of the Board for CN Mike House, President and CEO, Stollery Children’s Hospital Foundation Zahra Somani, Chairman of the Stollery Children’s Hospital Foundation Douglas Goss, Q.C., Chairman of the Board of Governors of the University of Alberta and Stollery Children’s Hospital Foundation Board Trustee

Lydia Ko, 2013 CN Canadian Women’s Open Champion

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9/18/13 10:33:05 10/28/13 4:30:28 PM AM


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HEROES - Fall 2013  

The Fall issue of HEROES Magazine, the quarterly publication of the Stollery Children's Hospital Foundation.

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