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STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION • SPRING 2014

FAMILY FOCUS The Stollery puts stock in the wisdom of patients and their loved ones

CHIANTI CARES An Edmonton entrepreneur and his staff support kids in the community

PM 40012957

PLUS: HOW TO PLAN TODAY FOR FUTURE GIVING

Triple Threat

DANCER DELANEY SAUNDERS IS BACK ON HER FEET, THANKFUL FOR THE HELP OF A TRIO OF BENEFACTORS

THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC GROUP

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In support of kids with life-threatening illnesses

Thank you to our participants, volunteers, salons, donors and sponsors! On behalf of the thousands of kids who depend on your support, as well as our founders, the MacDonald family, thank you for helping us raise more than $1.4 million for:

Corporate Partners: Media Partners:

CISN Country 103.9, Pattison Outdoor, The Edmonton Sun

Supporters:

Dairy Queen, GLC Moving, Halkier + Dutton Design, Manic Panic, NWT Promotions, Paul Mitchell, Printworks, Romy Young Photography, SnoGlobe Communications, WAHL For more information, visit www.hairmassacure.com 000Hero-HairMassacure-FP.indd 1 2 HEROES_Spring2014_pg02-03.indd

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contents SPRING 2014

Stollery Family

Departments

12 TO HONOUR HALEY

5 FAMILY FIRST

Mother gives back to the Stollery in the spirit of her daughter

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

18 MEET KARINA BLACK

6 FOUNDATIONS OF LIFE

This pediatric nurse practitioner at the Stollery is making a positive impact on her patients and their families

Stollery Family Day Classic; Weehelp; Tabs for Rachel; Rabbit Hill Winter Festival; Talitha’s Hope for a Cure; and more

23 STRONG AND SILENT TYPE Music, being read to and getting outdoors are among this eight-yearold’s favourite things

22 TECH FILES

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30 SPROUTS OF HOPE Alberta researcher and front-line doctor looks to broccoli sprouts as a possible preventer of cerebral palsy

32 GEAR UP AND GIVE How a welding company made huge profits for charity by selling hats and hoodies

Pediatric simulation is helping health care workers learn hands-on skills

34 CORPORATE HEROES For well-loved Chianti Café owner Ken Rubuliak, giving back is part of his recipe for success

Features 14 THREE’S COMPANY Make-A-Wish Foundation® Northern Alberta, Stollery Children’s Hospital Foundation and Ronald McDonald House® Northern Alberta helps kids

20 START TODAY Overcoming procrastination is an important and necessary step in estate planning

37 PORTRAIT Pediatrician-turned-geneticist helps his patients, young and old, understand the molecular root of health conditions

38 THE LAST WORD A mom’s tribute to her daughter’s short life in and out of the Stollery, and how her sons are honouring their sister’s memory

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25 YOUNG AMBASSADORS Kids giving back is a trend the Stollery Children’s Hospital Foundation is thankful to see grow

28 SHIFTING THE FOCUS

14 ON THE COVER: Delaney Saunders is dancing through life, post-cancer PHOTO: Kelly Redinger S TO L L E RY K I D S. C O M

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Through its Family Centred Care Network, the Stollery is leading family-friendly pediatric care

HEROES IS A YEAR OLD! Help us celebrate by giving your feedback in our readers’ survey at stollerykids.com S P R I N G 2 0 1 4 | HEROES

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In Appreciation

SPRING 2014 VOL 2 • No. 2 STOLLERY CHILDREN’S HOSPITAL FOUNDATION ASSOCIATE EDITOR: ALEESHA JEX

May 12th-18th National Nursing Week

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 Ltd. RICHARD BALAN, RTA Holdings Ltd. VALERIE BERGER, ATCO Gas Ltd. JONATHAN CHIA, CA, Melcor Developments Ltd. HERBERT CHUI, SIF Asset Management Group Inc. KEVIN ERKER, Lakeside Roofing DOUGLAS GOSS, Q.C., Bryan & Company LLP NOAH JONES, BA, CFP, CLU, Sorrell Financial Inc. RICHARD KIRBY, MBA, Felesky Flynn LLP ROD MACKENZIE, Legato Resources Ltd. DR. RAYMOND MUZYKA CATRIN OWEN, Calder Bateman Communications LEIGH-ANNE PALTER, MBA, Conroy Ross Partners GORDON PANAS, PCL Constructors Inc. DR. WILLIAM J. SHARUN MICHEAL WEBB, MacLachlan and Mitchell Homes Inc.

PHOTO: ROMY YOUNG PHOTOGRAPHY

The Stollery Children's Hospital Foundation wishes to thank the amazing nursing staff at the Stollery for going above and beyond for our kids!

EX OFFICIO: 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 DIRECTOR OF CUSTOM CONTENT: MIFI PURVIS EDITOR: SHELLEY WILLIAMSON ART DIRECTOR: CHARLES BURKE ASSOCIATE ART DIRECTOR: ANDREA DEBOER ASSOCIATE ART DIRECTOR: COLIN SPENCE PRODUCTION MANAGER: BETTY FENIAK SMITH PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTION: KAREN REILLY CONTRIBUTING WRITERS: Colleen Biondi, Caitlin Crawshaw, Lucy Haines, Michelle Lindstrom, Poonam Madan, Nadia Moharib, Christy Nich, Mike Skrypnek CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Linda Hendry, Alistair Henning, Brittany Paige, Aaron Pedersen, Kelly Redinger, Amy Senecal, Soulumination, Romy Young Photography, Nicki Wohland 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 reproduced without permission from the Stollery Children’s Hospital Foundation.

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

Family First PHOTO: ROMY YOUNG PHOTOGRAPHY

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

HAIR RAZING: Stollery kid Maria Lovsin takes the clippers to Mike House’s pink locks.

SPRING: IT’S ABOUT NEW BEGINNINGS. The anticipation of life anew, filled with change, growth and optimism that tends to put a welcome stride in one’s step after a long, hard winter. For many families at the Stollery, however, the optimism is of a different nature. And it’s certainly not seasonal. It’s about finding strength in the resilience of a child who continues to defy the odds and who inspires those around him/her despite weeks, months and often years of regular hospital visits. It’s about taking comfort in the expert care provided by the many excellent specialists, doctors, nurses and support staff who become part of these families’ extended family. And it’s about ensuring, no matter what a child is going through, that the Hospital has the right people, programs and resources to ensure the best possible health outcomes. In this issue of Heroes, we bring you several stories about one of the core services the Stollery does best: centre its care on the needs of the patient and the patient’s family. Family centred care is a concept that is making an amazing difference in the diagnosis, treatment and recovery of pediatric patients at the Stollery. The skilled professionals at the Hospital recognize the pivotal role the family plays in the life and health of a child, and they work collaboratively with the family to assess the needs S TO L L E RY K I D S. C O M

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of the child and the family as a whole. The family is even involved in developing the care plans for their child. In the case of Christina Herbers, this level of care involved learning how to feed and care for her daughter, Jaina, at home (see “Strong and Silent Type” on page 23). Jaina suffered severe health complications as the result of a vehicle collision while in utero. Christina continues to make regular visits to the Stollery – sometimes with Jaina for regular checkups and other times as a volunteer for the Family Centred Care program; her way of giving back to a hospital that has given her so much. Then there’s Karen Klak, who volunteers at the Stollery in memory of her daughter, Haley. Karen witnessed the remarkable effect Haley had on the people around her as a patient at the Stollery. Karen discovered first-hand what family-centred care means while spending countless hours next to teams of specialists who, while caring for Haley, provided comfort and compassion to Karen and her entire family. Karen now shares her personal story with pediatric residents and nursing students as part of the Family Centred Care Council’s Family Talks program (see “To Honour Haley” on page 12). Family-centred care is also reflected in the work we do alongside our proud partners, Make-A-Wish® Northern Alberta and Ronald McDonald House® Northern Alberta, who helped us make this year’s Hair Massacure one of the most successful in the event’s proud history. Like the Stollery, these two organizations understand what it means to care for the family as a whole, whether it’s providing them with the comforts of home when they are away from home, or making a larger-than-life dream come true for a family who have sacrificed so much in the hope of improving their child’s recovery. I encourage you to read our cover feature story on page 14. Here you’ll learn about one amazing child’s journey through the Stollery and how support from all three of these charitable organizations helped her and her family navigate many stressful experiences during her battle with cancer. We truly appreciate your continued support of our Foundation and for taking the time to read about some of the remarkable people who continue to demonstrate why the Stollery is such as a jewel in our community. They say it takes a community to raise a child. I say it takes a worldclass children’s hospital to raise the entire community to new heights as we continue to discover the Stollery’s endless potential. Thank you and have a wonderful spring and summer. S P R I N G 2 0 1 4 | HEROES

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foundations OF LIFE

Teck Cares for Kids PHOTO COURTESY OF TECK COAL

EMPLOYEES AT TECK COAL KICKED OFF A COMPANY-WIDE CARING FOR KIDS

campaign again this year on May 1 and are looking for another successful month of fundraising for three children’s hospitals. The company’s 4,500 employees pool their efforts to drum up funds through a variety of initiatives, and choose whether they would like to support the Stollery Children’s Hospital, the B.C. Children’s Hospital or the Alberta Children’s Hospital, says Terri Koch, office co-ordinator based out of Teck’s Calgary office. “Obviously the Hinton people would give money predominantly to the Stollery,” she notes. “But some people here in Calgary choose to give to the Stollery, too.” In 13 years the company, which has employees in southeastern B.C., Hinton and Calgary, has raised more than $200,000 to fund equipment, programming and growth at the Stollery, including $34,000 in 2013 alone. In the Calgary office, initiatives include 50/50 draws, an omelette breakfast, an international potluck, a jean day, a silent auction, a pizza lunch, and count-the-candies in a jar, says Terri. “We do little in-house events like that, and each site would do their own events according to their organizer.” The company then matches the money raised up to $100,000. She says the move to support children’s charities just made sense for Teck Coal. “Children’s hospitals are something that everyone can agree on,” Terri says. “Our communities where we do business are very important to us, and kids there are our future. We all have them in our lives in some form and fashion, and kids need us. Our future relies on having healthy kids that grow up into healthy adults.”

PHOTO: NICKI WOHLAND

ALL SMILES: In 2013, Pizza 73 raised $32,000 in Edmonton and area for the Stollery through two Slices For Smiles Campaigns. Thanks for helping kids like Jonathan, one slice at a time!

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EACH MAY, COSTCO STORES IN NORTHERN ALBERTA RAISE PHOTO COURTESY OF COSTCO

money for the Stollery Children’s Hospital, and this year is no different. Individual stores have a little bit of freedom to fundraise for the Stollery, says Jeff Frado, this year’s campaign lead and manager of Costco’s Sherwood Park location. But Costco shoppers shouldn’t expect anything too flashy in the stores that specialize in no frills bulk buys. “We’re kind of low-key – there’s not a lot of fancy signage. So we try to keep the Stollery Children’s Hospital campaigns simple as well,” he explains. “Ideally, what we would like to see is every cashier asking every member that comes through their till to make a donation.” The simple strategy can be very effective, and for central and northern Alberta Costco stores it has been. Last year, the Grande Prairie, Edmonton, and Sherwood Park locations along with half of the Red Deer store’s donations (the other half goes to the Calgary Children’s Hospital) raised $510,121 – and the company matched 15 per cent of the funds, to bring the total donation up to $588,271. Jeff anticipates that their fundraising sums will be even more impressive with the addition of a new St. Albert store, which opened in October 2013. He’s hoping in 2014 the stores will be able to donate a combined amount of more than $700,000.

PHOTO COURTESY OF COSTCO

PHOTO COURTESY OF TECK COAL

Costco Gives Back in Bulk

PHOTO COURTESY OF AMY JONES

PICKING UP THE TAB FOR RACHEL

PHOTO: NICKI WOHLAND

WHEN THEIR GREAT-GRANDDAUGHTER RACHEL WAS diagnosed with cerebral palsy in 2008, Pauline and Russell Dean, of Manitouwadge, Ontario started collecting “Tabs for Rachel” from donated beverage cans. As the word spread throughout their small community of just over 2,100, the Deans began finding tabs and cans in their mail box, in bags by their front door, and mailed to them from far-flung relatives. After Rachel died in 2011 at age six, Pauline and Russell decided to continue to collect cans and convert them to cash, to support the Stollery Children’s Hospital, where Rachel had been receiving care. They are constantly encouraged by the response and donations. “We go outside and there will be cans up against the shed door, and cans on the sidewalk, or up by the back door, sometimes they’re at the end of the driveway,” Pauline says. “I made a little stone inuksuk and Russell made a sign that sticks up behind the inuksuk that reads ‘Tabs for Rachel,’ so people know where to drop them off.” Pauline also picks blueberries when they’re in season to sell and add to their Stollery fundraising tally. Since 2011 Pauline and Russell have sent four cheques, bringing their total donations to $1,700. They will keep it up, too, because The Stollery is important to so many, Pauline says. “We appreciate what they did for Rachel, and what they’re doing for other little boys and girls who have medical problems.” S TO L L E RY K I D S. C O M

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OVER TO YOU: Want to start your own fundraising campaign? Call a member of our Community Initiatives Team at 780-433-5437 to find out more. S P R I N G 2 0 1 4 | HEROES

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foundations OF LIFE

Hope and Awareness for Pulmonary Hypertension PHOTO COURTESY OF THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION

AFTER HER DAUGHTER TALITHA WAS DIAGNOSED WITH pulmonary hypertension, a degenerative lung disease that can affect anyone of any age, Nicole Moores felt like there was something more that she could do to help her daughter. So she decided to put her networking skills to good use in her home community of Fort McMurray and host an event in November, Pulmonary Hypertension Awareness month, with a goal of raising $100,000. On November 9, 2013 that dream came true for Nicole, when Talitha’s Hope for a Cure event raised more than $116,000 for the Pulmonary Hypertension clinic in the Stollery Children’s Hospital, where Talitha is still receiving treatment. But Nicole isn’t going to stop now that she’s surpassed her initial goal; she is now focused on raising the profile of the disease. “I think it’s important that people know of pulmonary hypertension, because it is rare and I had never heard of it, until my daughter was diagnosed with it,” she says. “And it is life threatening, and it is killing people of all ages. And it’s not a nice journey to be on. So if we could put my money towards research, I’d feel really good about that.”

THERE WERE A LOT OF PEOPLE WAITING FOR KAYLEN TO arrive on when he was born on November 9, 2006, not just his mom, Annette Gaze, and his dad, Mark Jiminoff. The Sherwood Park couple already had a blended family of five children, some of them nearly grown at the time. Kaylen’s arrival would signify the unbreakable bond between them all – and it did. But there is nothing certain in life or parenting. Two weeks before Kaylen’s due date there were indications that he was suffering from a congenital defect. He might not survive delivery and – if he did – he would likely not live for long, nor come home. Just two days after the family found out about his condition, Kaylen died in the minutes before Annette delivered him. Family was there for support throughout Annette’s labour and Kaylen’s sisters and Mark were present at his birth. The family didn’t know if they were expecting a boy or girl, so one of his sisters came up with a name that would work perfectly for either. “Kaylen” means “forever loved.” Annette and Mark are all about their family, and they all helped each other through their grief. Annette took a few months off before launching herself back into her real estate career. Their busy lives resumed and they treasured Kaylen’s brief passage. It seemed natural that, when his seventh birthday fell on a Saturday last year, it would be the perfect date for the couple finally to get married. “Our wedding was really about our kids and family” Annette says. Having lived together seven years, they were at a stage in life where they did not want or need gifts, so their wedding invitations asked guests instead to make a donation to the Stollery Children’s Hospital Foundation in Kaylen’s memory. “We had a table set up, where our guests could sign a bench, rather than a guest book,” Annette says. The family planned to place the bench later under Kaylen’s tree, which they had planted in their yard after his death. Alongside 8

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the guest table at the wedding there was another tree with lights, a candle lit for Kaylen alongside his photo, and a Stollery bear with a decorative basket where guests who had not already donated to the Stollery could do so in Kaylen’s name. Seven years after Kaylen’s birth, November has taken on even greater significance in the family’s lives. Two weeks after the wedding, Annette’s daughter had a baby, and Annette and Mark welcomed a grandchild into the fold.

MARK AN OCCASION: Find out how to give in memorial or in honour of a wedding or other special event at stollerykids.com/ways-to-give 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 COURTESY OF KEVIN IVERSON

PHOTO: KELLI SCHERR

An Auspicious Date


FOR THE THIRD YEAR RUNNING, FOLKS AT THE RABBIT HILL Snow Resort decided to turn the family-friendly Rabbit Hill Winter Festival into a day to raise money for the Stollery Children’s Hospital. Jocelyn Wetterberg, director of marketing for Rabbit Hill, says the company chose the Stollery because having a child treated there “is something that a lot of the staff here can relate to. Friends, family members, they’ve all had to experience the Stollery,” she says. The annual festival has grown into something that just gets better each year, Jocelyn says. “We offer a bunch of different events for families. We’ve done sleigh rides and bake sales in the past to raise money for the Stollery. We build a big snow slide and we build a bunch of race courses for kids to give that a try, as well.” A portion from each lift ticket sold on the designated day, which this year was February 15, was donated along with the proceeds from a barbecue, a bake sale, and any monetary donations given on site. This year Rabbit Hill Snow Resort was able to present a cheque of just over $3,000 to the Stollery Children’s Hospital Foundation.

POP-UP TOT SHOPS PHOTO COURTESY OF THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Stollery Gets a Lift from Rabbit Hill

PHOTO: KELLI SCHERR

This Party is On Fire THE TOFIELD FIRE DEPARTMENT HAS SOME PRETTY NICE

PHOTO COURTESY OF KEVIN IVERSON

bragging points. First, the force is well-trained and populated with some very good firefighters. Second, all of them are proud volunteers. And third, they love to give their time and efforts to the community, beyond their duties on the force. Kevin Iverson is the past president of the Tofield Fire Department Society. In his decade as president, the department has staged three firefighters’ dinner-and-dance galas with a silent auction benefitting the Stollery Children’s Hospital. Called the Tofield Firemen’s Ball, the event is held every third year. The most recent was held in November, for a sellout crowd of 200 at the community hall. Don Gratz (of Gratz Manufacturing) again donated a mechanic’s bench that could retail for $3,000 to $4,000. The take for that item alone was in excess of $10,000. Other items in the silent auction raised the grand total to about $22,000. The combined total for the three galas in Iverson’s tenure as chief is about $60,000. “We have about 30 members at any given time, and there are some among us whose kids have had to use the Stollery,” Iverson says, “We are lucky to have this amazing facility just a hop, skip and a jump from Tofield.”

DONOR DOLLARS: After raising more than $10,000 in 2013, Andrea plans to drum up another $15,000 this year.

IT ALL STARTED WITH HEARTFELT SYMPATHY FOR FAMILY friends who had lost their child to leukemia. Andrea Peyton, founder of an organization she has called Weehelp, wanted to find a way to provide support to families of kids with health issues. She started listening to the young families living around her, and realized many of her peers were complaining that they had too much stuff. She thought, “why not begin collecting clothing donations and toys to sell at low prices and give the proceeds to the Stollery?” Her “pop-up tots shop” idea spread like wildfire. People feel good donating their cherished items when they know the money will go to support the children’s hospital, Andrea says. So far Weehelp has put on two sales – one in Edmonton, and one in her hometown of Edson, Alberta – and raised $10,290 for the Stollery. Weehelp already has three confirmed upcoming sales and has already had its first for 2014 and Andrea hopes to raise another $15,000 this year. Although the sales are time-consuming, she says the effort is well worth it. “There is a real satisfaction that goes along with it. It’s my passion – I just love it,” says Andrea. “That makes it really easy to get through the tough days or the stressful days. It’s a way that everyone can help, and support the Stollery without necessarily having to donate money.”

PITCH IN: Have some clothing or toy donations? Need some things for the wee ones? Check out weehelp.ca or call (780) 717-0973 for more details on upcoming sales. S TO L L E RY K I D S. C O M

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foundations OF LIFE

AT 10, SHE’S A CLASSIC brain and spine, and making frequent trips to the Stollery Children’s Hospital in her mere 10 years, Olivia Beaudoin is into the same things as other kids her age. But she really, really loves her hockey. So when her favourite team and major fundraiser in this year’s Stollery Family Day Classic hockey tournament decided to show support for Olivia, she was over the moon, says her mom Wendy. “There are many opportunities Olivia has had to receive special attention due to her illness, but I think this one may top the list,” Wendy wrote in a letter to the Stollery Children’s Hospital Foundation. After being discharged just days before this year’s February 1417 tourney after her 29th, 30th and 31st surgeries, Olivia became the inspiration for the SWAT Spitfires, an Novice team comprised of players her age. Olivia first met one of those players, 10-year-old Liam Dumelie, when she was at the Stollery. He went on to raise more than $6,000 in this year’s Stollery Family Day Classic in her honour. “For Liam he had already participated in the Stollery Day Classic so he was used to raising some funds,” says his dad, Patrick Dumelie. “The day he met Olivia, when he was at the Stollery, really had an impact on him, and he could see all the good work that happens at the Stollery and how it really benefits the kids. He was inspired by Olivia and he’s set his mind to raising the funds and he does it in her honour. For the last two years, he’s been among the top five fundraisers.” To Olivia, the Spitfires players are her heroes – and they are fast becoming her parents’ too, says Wendy. So when the youngster not only got to park her wheelchair near the glass at the Terwillegar Rec Centre rink for their games but was on the receiving end of their “hockey salute” as they passed on the ice, she was delighted at the attention from her newfound friends. “The thing that actually touches us the most about this team is that most of them aren’t in the same class, or even the same school. There is something about having someone your own age support you that is

priceless,” says Wendy. “When she watches them play, she beams and goes on about how they are amazing hockey players and how they will surely make the NHL sometime in the near future. They are her heroes on and off the ice.” Liam even told his coach that Olivia was his inspiration, so the team’s warm-up speech became about how brave she’d been, says Patrick. She even got a team jacket and joined her honorary teammates in the dressing room after the game. “The best part of the story from my perspective is this team, I think they raised $14,000 for the Stollery, but it really brought home for each one of these kids what the importance of giving back and philanthropy and how fortunate they are. That’s exactly why we started the tournament. The money is gravy, in our opinion,” Patrick says. Since its inception in 2011, the Stollery Family Day Classic – through players like Liam and his team – has raised more than $1 million for the Stollery Children’s Hospital Foundation, including $375,000 this year alone. “The Family Day Classic is a great example of how the community comes together to support children’s health,” says Karen Faulkner, vice president, fundraising operations. “It was an idea that a group of hockey dads had and it’s grown into this incredible tournament – and it’s really making a difference.” PHOTO COURTESY OF SWAT SPITFIRES

DESPITE HAVING HAD MORE THAN 30 SURGERIES TO HER

THE EYES HAVE IT: PHOTO COURTESY OF SWAT SPITFIRES

As part of the Critical for Care campaign, the Stollery Children’s Hospital Foundation is looking to raise $400,000 for a new children’s ophthalmology clinic. Proceeds raised by the Spitfires and other participants in this year’s Stollery Family Day Classic will bring the hospital closer to this fundraising goal. “What we’ll be able to do is to build an incredible clinic and have the equipment that we need and be able to attract the best doctors,” says the Foundation’s vice president, fundraising operations, Karen Faulkner. “It’s really been about the community coming together to make that happen.”

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Save the Date The Stollery Children’s Hospital Foundation is honoured to have caring people in the community creating events with proceeds supporting the Foundation 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.

ATB TEDDY FOR A TOONIE CAMPAIGN DATE: May 1 to 31, 2014 LOCATIONS: Visit any northern Alberta ATB Branch

PHOTO COURTESY OF SWAT SPITFIRES

Drop into your local branch and get your custom limitededition panda bear today! Every year ATB Financial customers and associates raise funds by hosting fun activities and collecting donations for children’s health in Alberta. This year, all funds raised will support Critical for Care projects at the Stollery. Visit ATB.com/teddy.

RCEME CAR SHOW DATE: June 7, 2014 TIME: 10 a.m. to 4 p.m. LOCATION: Edmonton Garrison Parade Square The Canadian Forces EME Branch is hosting the RCEME Show and Shine, with food, an auction, prizes, music, and amazing cars and trucks. Admission is by donation. Contact Patrick at 780-920-3054 or patrick.blount@forces.gc.ca to register.

MERRIOTT ADVENTURE RACE, FITNESS EVENT SERIES AND TRIATHLON – FOR KIDS, ADULTS AND FAMILIES DATES: June 15 and 22, July 26 and 27, 2014 Throughout the months of June and July, Merriott Fitness is supporting health, active lifestyles while raising money for the Stollery. Visit merriottfitness.com to register or learn more.

DIRTY BIRDS CHARITY HOCKEY TOURNAMENT IN HONOUR OF JOSHUA DA SILVA

RACING FOR A CURE

DATES: May 23 and 24, 2014 TIMES: 6 to 11 p.m. on Friday, all day Saturday LOCATION: Average Joe’s Sherwood Park and Argyll Plaza Arena TICKETS: $20 for Friday night

DATE: June 21, 2014 TIME: 10 a.m. to 3:30 p.m. LOCATION: Castrol Raceway, Highway 19, Nisku RIDES: $50 for two laps

Dirty Birds Charity Hockey Tournament is a two-day event supporting Neurosurgery Kids Fund at the Stollery Children’s Hospital. Join us on May 23, 2014 at Average Joe’s for a silent auction then on May 24 at Argyll Arena to cheer on the hockey teams, enjoy kids’ activities and have a snack. For more information, please contact Melissa at melissadasilva@shaw.ca or at 780-406-4030.

Now in its third year, Racing for a Cure is an annual event that benefits the Stollery Children’s Hospital Foundation and Kids with Cancer Society. Join us and experience a fast-paced, thrilling ride around the Castrol’s revamped track in one of many exotic vehicles. Visit rfacedmonton.com for more information.

STEPHIE’S BIKE TOUR FOR THE STOLLERY DATE: May 25, 2014 TIME: 8:30 a.m. to 2:30 p.m. LOCATION: City Hall, 10005-102 Street, in Fort Saskatchewan The fourth-annual Stephie’s Bike Tour for the Stollery will start and finish at City Hall, 10005-102 Street in Fort Saskatchewan. This event is about fun, family, healthy active living while giving back. Visit stephiesbiketour.com for more information.

EVERSLEY INVITATIONAL BASKETBALL TOURNAMENT DATES: June 6 and 7, 2014 TIME: 8 a.m. to 6 p.m. LOCATION: NAIT Main Campus, 11762 106 Street This year’s Eversley Invitational Basketball Tournament will feature a dunk competition, three-point shootout, barbecue and bake sale, with proceeds going to the Stollery Children’s Hospital Foundation. For information, visit eversley.ca or email eiballtourney@gmail.com.

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MIRACLES THE MARRIOTT WAY DATE: June 25, 2014 TIME: Shotgun start at 8 a.m. LOCATION: Lewis Estates Golf Club, 260 Suder Greens Drive Marriott at River Cree presents its first-annual Children’s Miracle Network golf tournament in support of the Stollery. Teams of four are $1,200 and sponsorships are available. Call 780-930-2615 or email amy.brochu@marriott.com to learn more.

HAIDA GWAII TOTEM TOUR DATES: June 16 to July 1, 2014 LOCATION: Masset, Haida Gwaii to Edmonton On June 16, 2014, more than 30 cyclists will gather at the Yellowhead Highway Mile 0 sign in Masset, Haida Gwaii, and begin a 16-day, 1,760-kilometre journey to bring a three-metre high totem pole to Edmonton for placement at the Stollery Children’s Hospital. Cyclists pedal distances ranging from 100 to 170 kilometres a day on their journey to Edmonton, arriving on Canada Day. Come out to celebrate their arrival! Visit haidagwaiitotemtour.kintera.org

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volunteer HERO

BY Christy Nich

To Honour Haley Mother gives back to the Stollery in the spirit of her daughter

KAREN KLAK VOLUNTEERS IN MEMORY OF her daughter, Haley, who loved the Stollery Children’s Hospital. There, because of the medical challenges she faced, Haley met many people and inspired them with her positive attitude and grace. She also thoroughly enjoyed helping the Stollery Children’s Hospital Foundation – through Radiothons, Miracle Treat Day, and when featured on CTV and in the Edmonton Sun as one of the Stollery’s monthly “Little Miracles.” Now, Karen is part of a group of presenters who share

their stories from a family perspective. She spent four years as a member of the Stollery Family Centred Care Council and is currently a member of the broader Family Centred Care Network. Her main area of involvement is the Family Talks program. “I’ve had the opportunity to participate in a number of presentations to groups such as diagnostic imaging, anesthesiology and pediatric residents, as well as regular presentations to new nurses at the Stollery and fourth-year nursing students at MacEwan University,” she says.

PHOTOS COURTESY OF KAREN KLAK

A FAMILY AFFAIR: The Klak family all pitched in during Miracle Treat Day back in August 2007. From left are Connor, Alyssa, and mom Karen with Haley, who had just gotten out of the hospital in time to get to Dairy Queen.

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The Klak family was devastated by the news that their eldest son had a potentially life-threatening peanut allergy, but little did they know their lives would be thrown into even bigger medical turmoil. According to Karen, her daughter Haley was a healthy baby, but by age one, strange symptoms began to appear. At 17 months, Karen and husband, Greg, brought Haley to emergency, where a CT scan revealed a mass in her head – an MRI the next day confirmed a sizable tumour, but, thankfully, a non-cancerous one. On the MRI, the tumour “looked like a third eye between the other two,” says Karen. Because of its location, the tumour was inoperable, so Haley began chemotherapy. All went well and the tumour shrank – until Haley became allergic to the chemo. Fortunately, the shrunken tumour remained stable for a few years until Haley was old enough for radiation, and regular MRIs followed to ensure she was “clear.” In 2005, though, Haley suffered two strokes – one within 24 hours of surgery. Haley had to learn to communicate all over again, but her determination saw her get back to a new normal after two years of speech therapy. She even continued to participate in the Radiothon. In February 2008, when Haley was 11, she was lying on the couch at home, sick with a cold, when she told her mom that her cheeks were itchy. Then she lost consciousness. An MRI revealed another tumour, this time on her brain stem. Radiation was the only viable option, but this time, it did not work. Instead of giving up and waiting to die, Haley chose to make the most of the time she had left.

Instead of giving up and waiting to die, Haley chose to make the most of the time she had left. Hilary Anaka, then-Stollery Foundation communications officer, heard of Haley’s condition and helped arrange special visits. “Hilary was pivotal in making Haley’s last few months wonderful for her and memorable for us,” says Karen. Ethan Moreau, captain of the Edmonton Oilers at the time, also arranged a one-day trip for the Klak family to Disneyland, making one of Haley’s wishes come true. After Haley died on Thanksgiving Day in 2008, Karen knew she would do anything to help the Stollery. That December, she did some work for the Snowflake Gala, and a few months later, she prepared a written tribute to be played during the Radiothon. When the radio station requested a brief interview, Karen was relieved to simply get through it knowing it was the least she could do given what Haley and so many other kids in the hospital endure every day. In 2010, she volunteered at the Mother’s Day Run and Walk with her daughter Alyssa and since then, they, along with sons Connor and Brendan, have been raising funds at Stollery Foundation events ranging from the Snowflake Gala and the Stollery Family Day Classic hockey tournament to the Sport Chek Mother’s Day Run and Walk. Karen says people ask her how she can be involved with the Stollery Children’s Hospital when it’s the place where her daughter died. “I don’t have a hard time going back,” she says, “because Haley had a lifetime there. There were many happy moments.”

BE A HERO: If you would like to volunteer for the Foundation, contact Stacey Johnson at 780-431-4606 or visit stollerykids.com/volunteer. S TO L L E RY K I D S. C O M

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IN GOOD COMPANY: From top, Karen Klak is joined by Hilary Anaka, former communications officer at the Stollery Children’s Hospital Foundation; Alyssa and Karen Klak (third and second from right) join some of the other volunteers at the Snowflake Gala; and Haley and Karen are all smiles on the way back from Disneyland, following a trip made possible by a generous donor.

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feature HERO

THREE’S

COMPANY BY Colleen Biondi

Make-A-Wish Northern Alberta, Stollery Children’s Hospital Foundation and Ronald McDonald House Northern Alberta help kids and their families face life-threatening illnesses

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PHOTOS: KELLY REDINGER

DETERMINED DANCER: Delaney Saunders didn’t let cancer get in the way of her dancing. At 13, she’s back on the floor and regularly competing in dance competitions.

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HE SOFT-TISSUE BUMP ON THE ARCH OF NINE-

year-old Delaney Saunders’ left foot didn’t appear to be anything unusual. After all, she was a dancer and the odd bit of swelling was par for the course. But after a trip to the doctor in March 2011, and a subsequent biopsy, the life of the young dancer from the tiny town of Marwayne, Alberta, was changed forever. She had cancer – rhabdomyosarcoma to be exact. A spot on her lung meant it was stage four, so she embarked on heavy rounds of chemotherapy and a month-long radiation protocol at the Stollery Children’s Hospital in Edmonton, followed by a stem cell transplant in the spring of 2012 in Calgary. Today, Delaney is 13 and back to dancing, schoolwork, shopping and hanging out with her friends. “She is pretty much a normal teenager,” says Leasa Saunders, Delaney’s mother. But it is a new normal as the family still has followup appointments and scans at the Stollery, and makes return trips to Ronald McDonald House® (RMH) Northern Alberta – where Delaney and her mom stayed during her daily radiation sessions – to visit staff, patients and the S TO L L E RY K I D S. C O M

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facility’s special “Magic Room.” Delaney also continues to get calls from the wish grantor who arranged a tropical trip for the family to Beaches Resort in Negril, Jamaica, in February 2013 courtesy of Make-A-Wish® (MAW) Northern Alberta and who gave the entire family a sense of hope for the future. All three organizations are unique, but provide critical roles in helping children cope with life-threatening illnesses. It takes significant financial resources for MAW personnel to grant the wishes of each eligible child in Alberta every year, for funding of pediatric oncology research, for specialized staff to look after kids with cancer at the Stollery, and for RMH staff to offer warm and secure home-away-fromhome experiences for out-of-town patients (50 per cent of Stollery patients are from outside the Edmonton area). That is where a fundraiser like no other, affectionately called Hair Massacure, comes into play, says one of the event’s founders, Tammy MacDonald. This massive head-shaving event, which takes place around Valentine’s Day each year at West Edmonton Mall, started in 2003. S P R I N G 2 0 1 4 | HEROES

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PHOTO COURTESY OF LEASA SAUNDERS

FREE SPIRIT: Delaney is like most young girls her age, despite having battled cancer at the age of nine.

PHOTO COURTESY OF LEASA SAUNDERS

GAME FACE: Delaney takes a breather while in costume at a recent dance competition. Active in both jazz and ballet, the teen prefers the former.

Event founder Gord MacDonald, with the support of colleagues has been a two-week-old and the oldest was 82. It is wild at the West at Canada Post, shaved his hair in honour of daughter, Kali, who Edmonton Mall on the day of the event with 12 hours of entertainment was diagnosed at age two with acute leukemia and underwent and local celebrities who attend. “It is a really big show,” adds Tammy. daily chemotherapy. Paul Liimatainen, a boilermaker by trade, and an employee of Today, at 16, Kali, the inspiration for Hair Massacure and ambassador Alstom, a contracting company – who is also a grandfather – witnessed for the event for 12 years, is well. In fact, in 2012, she celebrated a decade the event in 2007 and has participated since 2008. He and his team of remission by releasing 10 bril(called Paul and Friends) have liantly coloured Chinese lanterns to raised more than $235,000 in At the 2014 Hair Massacure, the sky with her family. contributions to date. “It is almost more than 2,000 dedicated In its inaugural year, the St. Vallike you are a missionary,” he participants raised more than entine’s Day Hair Massacre’s 48 explains. “You are spreading the $1.4 million in support of kids at participants raised $37,000. At word about sick kids and how the 2014 Hair Massacure, more people can help out.” Paul “pinks” Make-A-Wish Northern Alberta, than 2,000 dedicated participants his hair and wears a name badge the Stollery Children’s Hospital raised more than $1.4 million in during the campaign which says, Foundation and Ronald McDonald support of kids at Make-A-Wish® “Go ahead. Just ask me.” It provides House Northern Alberta. Northern Alberta, the Stollery a jumping-off point and gives Paul Children’s Hospital Foundation the chance to talk to people about and Ronald McDonald House® Northern Alberta, three charities in- the importance of the event (afterwards, complete strangers have thrust tentionally gathered to benefit from the fundraiser. dollars into his hand). He is committed to the cause and will raise funds Tammy recalls a seven-year-old girl who raised $7,000 in seven for as long as he is able, he adds. “Every little bit helps.” days, a military wife who submitted 12 pages of pledges and a Santa The professionals at the helm of the three recipient charities are most look-a-like who “pinked” his long, flowing beard. grateful for this generous financial resource. Hair Massacure is an all-demographic event – the youngest participant It allows for a “continuum of care” for sick children and their families, 16

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PHOTO COURTESY OF LEASA SAUNDERS

PHOTO COURTESY OF LEASA SAUNDERS

PICTURE PERFECT: Dad Micheal, mom Leasa, brother Brennan and Delaney pose for a portrait on the trip to Negril, Jamaica, in February 2013 made possible for the Saunders family through Make-A-Wish Northern Alberta.

says Mike House, president and CEO of the Stollery Children’s Hospital Foundation. “Kids need treatment, play and a comfortable place to lay their heads at night to navigate such stressful experiences.” All three charities assist with Hair Massacure by supplying volunteers, resources and management duties. “The model is a perfect fit,” adds Martin Dugas, CEO of Ronald McDonald House® Northern Alberta. “It is a privilege to support and to share the journeys of our families together.” “There is great value in working with other charities,” agrees Cathy Gabucci, CEO of Make-A-Wish® Northern Alberta. “You can split up the workload and contribute your small part, but reap the benefit of everyone’s efforts. The donors have greater impact as well. With one donation, you are supporting three charities.” Partnerships take work to be successful. They need a common goal and vision, clear roles and responsibilities, forward-thinking leadership, clarity about values and principles and focus on the end result – making the lives of children with life-threatening conditions and their families a little bit easier. Competitive egos need to be firmly checked at the door. This trio recommends other charities examine the benefits of collaboration. “Nobody has cornered the market on kindness,” says Martin. The Saunders family continues to appreciate that kindness, as they embark on yet another followup scan for Delaney this month. “When you see how the three organizations work together, it is amazing!” says Leasa. “They are all so worthy.” S TO L L E RY K I D S. C O M

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TRIFECTA OF CHILDREN’S CHARITY RONALD MCDONALD HOUSE® NORTHERN ALBERTA • The 42,000-square-foot Ronald McDonald House Northern Alberta has 32 private suites for families seeking treatment for a sick child In Edmonton. • I n 2012, 855 families and 2,505 people stayed at RMHNA, which also features three kitchens and a school for guests in Grades 1 through 12. • Organizations or volunteer groups come to the House and prepare a homecooked meal for the families as part of the Home for Dinner Program. THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION • There are more than 200 pediatric specialists and sub-specialists providing care for children at the Stollery Children’s Hospital. • The Stollery is a world-renowned facility for complex and specialized services in heart surgery, solid organ transplantation, pediatric and neonatal intensive care, cancer care and neurosciences. • The Stollery provides specialized care for families from all over Alberta, the western provinces and the territories. MAKE-A-WISH FOUNDATION® OF NORTHERN ALBERTA • Make-A-Wish Foundation® of Canada has collectively granted more than 310,000 wishes to children worldwide since 1980. • Northern Alberta’s MAW has granted nearly 700 wishes to date. • Children who have been diagnosed as having a medical condition that is life-threatening, between three and 17, are eligible to submit a wish.

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PHOTO: AARON PEDERSEN

O

FOR THE KIDS: Karina Black, a nurse practitioner in the pediatric oncology department at the Stollery, says it’s the children who keep her coming back to work.

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MEET THE specialist

MEET

Karina Black BY Nadia Moharib

This pediatric nurse practitioner at the Stollery is making a positive impact on her patients and their families

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NE MIGHT IMAGINE THAT NOT EVERY WORKDAY

is a great one for nurse practitioner Karina Black. This specialist with the Stollery Children’s Hospital pediatric oncology program, however, always walks away from her job knowing she has had a positive impact, and there is no place she would rather work. “When I was in school, I never knew I would go into oncology,” the 46-year-old mother of two says of her chosen nursing specialty. “When I started my first couple of shifts, I was a little hesitant. There were a few really sick kids, and I thought, ‘Man, this might be a little scary.’ ”  But watching the nurses work together and seeing how they interacted with parents and patients was impressive and alluring enough for Karina, she adds. “Once I was in, I was hooked.” Even on bleak days there is an opportunity to contribute in a meaningful manner. “You can have a day where you have a child whose disease has come back and having to be part of the conversation that either treatment isn’t working, the tumour is getting bigger, there is nothing more we can do. All you can do is be honest with the family, be supportive and bring in resources,” Karina says. “It’s never an easy conversation, but somebody is going to have to be in the room and I can be there to support the parents. Sometimes I don’t say a word, but am there to listen,” she says. In her work, treating a patient is a family affair. “I’m dealing directly with parents, supporting them through the devastation of their child’s diagnosis,” she says. “The first thing a parent is going to want to know is, ‘Could I have done something different, did I do something wrong?’ It’s a lot of trying to reassure parents it’s not something they did wrong or ate wrong when they were pregnant 10 years ago.” She says her post also involves skills from examining patients to acting as a counsellor. With patients ranging in age from newborn to 18 years, Karina has to be creative in finding ways to make the medical world less scary. “If it’s a two- or three-year-old, I’m watching how they are playing. Kids always want to play and if they are in an exam room and bored, they will find something to do. I will do an exam on their parent’s lap as opposed to putting them on an examining table.”  While silly jokes and sound effects may work on the little ones, Karina is the first to admit some patients require more time and different tactics to build rapport. 

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“With the older teens, some think, ‘Who is this older, “loser lady” trying to be my friend?’ ” she says. “It doesn’t work.” After graduating from the University of Alberta’s Bachelor of Science in nursing program (BSN), Black earned a master’s degree in nursing. While she has done stints in cardiology, adult surgery, pediatric thrombosis and stroke, the bulk of her 23 years’ experience is in pediatric oncology. “Even on the worst patient days, there’s never been one where I don’t want to do this anymore. I really think I make a difference,” she says. “Even if I just connected with the child and put them at ease.” Yes, there are brain tumours, kidney tumours, leukemia, lymphoma and all sorts of ugly illnesses, but there are also moments of utter goofiness, trading silly jokes with patients. “Kids are incredibly resilient, they want to go to school and play and be as normal as can be,” she says. In a short stint in adult surgery, Karina saw that incredible optimism can often be lost with age – older patients, unlike children, are more apt to stay in their beds than get up and go. There are times, however, when even the brightest spirit is silenced, when illness claims victory over modern medicine. Travelling with those children and their families through their journey is an honour. Still, the lure of the job lies in the fact that – amid hours in the acute-care oncology clinic and everything from lumbar punctures to chemotherapy, bone marrow aspirates and biopsies – there are so many rewarding moments. “We have kids where, even though we know the outcome is going to be poor, they’ve gotten way more time – and quality time – than we ever thought possible,” she says. “Then we have had kids who we never thought would survive, but years down the road they are disease-free and doing well.”  “There are tough things about it,” she says of her job. “But it is also wonderful – wonderful families, wonderful staff and the majority of treatments are successful.” She doesn’t see a time when those in her specialty will be out of work. “I don’t think we will ever get rid of pediatric oncology, but maybe we can find ways to significantly reduce treatment times and reduce long-term effects of therapies. “We didn’t have an MRI to pick up brain tumours 20 years ago. We do now. There are different scans we can do and can find things faster and earlier than before. So much has changed.” S P R I N G 2 0 1 4 | HEROES

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ILLUSTRATION: LINDA HENDRY

giving GUIDE

START

TODAY BY Mike Skrypnek

Overcoming procrastination is an important and necessary step in estate planning

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UR FAMILY GREW UP WITH A UNIFYING PERSON

ILLUSTRATION: LINDA HENDRY

in our lives. We all called her “Aunt Mary.” To my mom, grandmother, sisters, cousins, Mary was always Aunt Mary. In reality, she wasn’t our aunt – and Mary wasn’t even her real name – in fact, to this day I am not sure what her name really was. Aunt Mary was a vibrant gal. She always wore the same royal blue pair of well-pressed polyester pants, her trademark red polka-dot blouse, bright cherry red L’Oreal lipstick and peacock-blue eye shadow. I’ll never forget the combined smell of moth balls and Chanel perfume. Mary was a force of nature. She commanded a room – our kitchen must have been less than 80 square-feet and she ruled it when she was in town. Mary had a husband, Chester. He was a gentle, quiet, rail of a man whose eyes sparkled when he smiled. He would grip his pipe between his teeth with that familiar fresh tobacco smell always in the air. While Aunt Mary would hold court, Chet, as we all called him, would stand off in a corner stuffing his pipe, smiling and minding his own business. Chet died a number of years before Aunt Mary did. He hadn’t given much thought to his estate and, unknown to all of us, had amassed quite a sum of wealth. The couple had a few investment properties and considerable savings. They had no plans in place when he died and when the estate finally settled, Aunt Mary had a significant sum that would support her through the rest of her life.

Without plans in place, Aunt Mary’s estate wrote a cheque to the Canada Revenue Agency of more than $500,000 for taxes. I was determined to make sure my Aunt Mary wasn’t going to leave our world without her affairs in order. As such, I corralled the energetic woman and began to explain to her how we would bolster her income by buying a life annuity, structure a charitable remainder trust to give to charity and protect what was left of her estate. She just stared at me when I spoke about it. She had this look: the kind of look she always had when her favourite pony was outside of her $2 bet to win, place or show. It was part disgust, part disappointment and part disbelief. She told me she found it too confusing and was just fine with the way her accountant had worked things out. I went along building my advisory practice, becoming more educated, writing papers and giving presentations. At some point along the way, Aunt Mary called for my counsel. We started talking, and did some preliminary reviews of her estate. Shortly after we began to navigate a formal planning process, Aunt Mary died. Without plans in place, Aunt Mary’s estate wrote a cheque to the Canada Revenue Agency of more than $500,000 for taxes. Naturally, I’ve always wondered if Aunt Mary was still around, would she be pleased with the outcome? I also used to think that the CRA was the biggest villain to preserving your wealth – and it is, a little bit. However, Aunt Mary showed me that there was something else going on. Even more powerful than overcoming CRA, it was overcoming procrastination. She just didn’t get to the planning! What would I tell Aunt Mary if she were alive today? Well, I wouldn’t detail the 104 planning strategies or tactics available to Canadians. I would, however, tell her these five critically important wealth principles (see sidebar). S TO L L E RY K I D S. C O M

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5 STEPS TO DIRECTING YOUR WEALTH START TODAY. When is the best time to plant a tree? Twenty years ago. When is the next best time? Today. HIRE A SPECIALIST. This reminds me of the guy in the FEDEX commercial tattooing himself, while beating two chess masters. We do not have to be experts at everything. We don’t tackle our own dental work and we wouldn’t do our own surgery. There are excellent qualified professionals who are knowledgeable about estate, tax and legacy planning. Hire them. WRITE DOWN WHAT IS IMPORTANT TO YOU. Take the time with the company of your spouse, a trusted friend or advisor and write down what is important to you. These are your dreams and values. Before you can get to your goals, you must be clear on these. It helps to have an objective person do this with you. When you’re standing in the middle of the forest, it is impossible to know the depth and scope of where you stand without getting some perspective. HAVE A WRITTEN INTEGRATED PLAN OF ACTION. There are two critical points to this. The first is to write a plan. That will be your road map that connects your legacy ideal to your starting point. An integrated plan takes into account a variety of variables that will have very different effects on your plan and will materially affect the success of your outcome. Better to see the light in the tunnel and be prepared for whether it is sunshine or a train. JUST DO IT. Twenty-eight years later, Nike still has it right. From the moment that phrase was coined and branded, we all embraced the idea. It exemplified progress and success in sports. Well, it has the same meaning for life. Don’t wait any longer; get to the planning.

Mike Skrypnek, author of Philanthropy; An Inspired Process, is an expert in guiding families in the journey to make a bigger impact in their lifetimes and beyond. This is the third of a four-part series. Contact Mike at Mike.Skrypnek@RichardsonGMP.com. S P R I N G 2 0 1 4 | HEROES

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tech FILES

BY Michelle Lindstrom

Practise Makes Perfect PHOTO: NICKI WOHLAND

Pediatric simulation is improving the training experience for health-care professionals and outcomes for patients

WHAT A DOLL: Dr. Jonathan Duff poses with HAL®(Hybrid Assistive Limb®), a child-sized mannequin which helps health care workers hone their skills.

DR. JONATHAN DUFF, PEDIATRIC INTENSIVIST at the Stollery Children’s Hospital and associate professor with the faculty of medicine and dentistry in the department of pediatrics, says health care education is changing. “If you look at the aviation industry, you would never get on a plane with a pilot who has not been through a flight simulator in the past year,” he says. “Simulation is going to become part of the health care culture where you’ve already mastered some of the skill in a simulated environment before coming on and seeing patients in the real world.” As one of a team of critical care physicians at the Stollery, Dr. Duff shares a role of being the physician-in-charge of the pediatric intensive care unit (PICU) when he’s on 22

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service in the hospital. He also co-facilitates the Stollery’s pediatric simulation program. Pediatric simulation can include the use of actors that allow doctors to practise communication skills and techniques in different scenarios – for instance, to inform families of bad news. It can also involve pediatric specialists gathering together to run through a complicated emergency situation and check that everyone knows the proper skills and protocols. This enables staff to be trained on the necessary, non-technical skills – such as communicating effectively, using resources appropriately and coordinating a roomful of medical staff efficiently – as well as the technical, hands-on skills required for management of critically ill patients. “We often work in high-risk, high-stress, high-impact environments,” Dr. Duff says. “It makes sense to allow people to practise those skills before they have to do it in the ICU with a real baby.” Small mannequins – infant and child-sized – are also part of the simulation training. These dolls can breathe, cough and move slightly to mimic what a real patient might do. “If we have a trainee in the ICU, they can practise resuscitating a sick baby and, at the end, we give him or her feedback about what went well and what didn’t,” Dr. Duff says, adding that if something does go wrong, better there than in the emergency room considering the mannequins can be rebooted and the skill can be practised again. For about seven years, as long as Dr. Duff has been on staff, the Stollery has run pediatric simulation training for nurses, respiratory therapists and already well-trained attending physicians who want to hone their skills through peer feedback. “We’re slowly moving forward,” Dr. Duff says. “Every year, we train more people.” The biggest struggle is the lack of dedicated training space in the Stollery, as most rooms are used for direct patient care. Still, the hospital sees an impressive draw of eager trainees, purposely seeking out positions at the Stollery because of its simulation training. “It’s nice to see there’s more research happening in simulation to show improvement in patient outcomes versus how we used to train people,” Dr. Duff says. “The idea that once you’ve seen me do it, now you go do it on someone’s baby – we’re not doing that anymore. Simulation allows us to practise.” 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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BY Michelle Lindstrom

alumni FILES

Strong and Silent Type Music, being read to and getting outdoors are among this eight-year-old’s favourite things

mother, Christina, of Rapunzel’s. Considering Jaina just turned eight, being compared to a fairytale princess is the ultimate compliment. She’s an unexpected teacher, says Chad, about his daughter Jaina, who has severe cerebral palsy. “For someone who can’t talk or move, she can teach you a lot.” Cerebral palsy symptoms vary, but Jaina’s include excessive drooling, an inability to walk, talk, sit or follow through with any purposeful movements. The disorder’s causes vary almost as much as its symptoms, but many times a brain development abnormality or disruption occurs before the child is even born – such as an infection, head injury, random genetic mutation or with lack of oxygen to the brain during birth. On January 7, 2006, Christina was 20 weeks pregnant with Jaina, and that morning Chad felt his daughter kick for the first time. Later that same day, as the couple drove home from dinner with friends in St. Albert, their car was T-boned by an 18-year-old male in a stolen truck fleeing police in a high-speed chase. Chad shattered his pelvis, broke some ribs, his collarbone and one vertebra while also suffering a concussion, lacerations and severe bruising. Christina had a serious concussion, broke some ribs and damaged her spleen enough that it led to an emergency splenectomy (removing her spleen) with medical staff closely watching Jaina’s heart rate the whole time. “All of my ultrasounds indicated everything was perfectly normal,” Christina says, adding that she and Chad only learned after Jaina’s birth that ultrasounds check for form – that all bones and organs are there – and not function. “She was born by spontaneous labour at 36 weeks at the Sturgeon [Community Hospital in St. Albert] because I wasn’t deemed high-risk,” Christina says. Jaina stayed at the Sturgeon only for about an hour before being transferred to the Stollery – the most obvious reason being respiratory distress. Christina and Chad discharged themselves roughly five hours after Jaina was delivered, against Sturgeon medical staff’s recommendations, Christina explains. “But I said, ‘I’ve got to be with my baby and she’s going to the Stollery, so that’s where I’m going!’ ” At five weeks, an MRI confirmed Jaina’s brain damage S TO L L E RY K I D S. C O M

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JAINA HERBERS’ LONG HAIR REMINDS HER

FAMILY OF FIGHTERS: A car accident left a pregnant Christina and husband Chad Herbers seriously injured and caused serious health issues for their in utero daughter. Jaina, now eight, was born at 36 weeks with cerebral palsy.

was not genetic and was due to injuries suffered in utero months ago from the car accident. Christina asked the Stollery’s doctors and nurses, “What do we have to do in order to get her home?” The answer was that Jaina would need three surgeries: a tracheostomy or “trach” (a tube is placed in the windpipe producing an airway while the opening is left accessible at the front of the neck to remove lung secretions), inserting a gastric feeding tube (G-tube) directly into her stomach, and a fundoplication (anti-reflux surgery to help keep food and acid down). S P R I N G 2 0 1 4 | HEROES

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PHOTO COURTESY OF ALBERTA HEALTH SERVICES

Also, the Herbers could not take their daughter home until both parents Depending on how her week is going, Jaina attends a preschool music class learned all of Jaina’s care, including secretion removal, muscle stimulation each week at the St. Albert public school to nurture her love of music. She also and feeding through the G-tube. loves being read to and going for long walks outside in the summer in her “From birth to three-and-a-half months, we were at the Stollery and modified stroller. Christina and Chad also keep her busy with home-schoolwere slowly taught her entire care, which is something you just don’t plan ing, which helps protect her from common viruses that attack her immune on,” Christina says. “Everyone was system much more severely than an so patient with us. We pushed hard average eight-year-old. “I volunteer with the Stollery’s Family to learn all of the skills really fast With a life expectancy shortened Centred Care program and it’s been and it felt like forever ... from what to about 12, “we just try to apprecipeople have told us, [three-and-aate the days that we have with her,” therapeutic for me to find another half months] is quite fast for a child Christina says. “She’s not verbal at group of parents that have children with a trach and on a ventilator.” all but she has a way of communicatwith really extreme challenges. I had The new parents would receive ing with people and it’s really neat a lot of anger and grieving.” support from Home Care to go home to us, the amount of people she has and they chose a self-managed care touched in her short life.” option, meaning they select and hire private caregivers – LPNs, respiratory One of those people is her five-year-old sister Addison, who gladly therapist students, nursing students – to work in their home and provide lets people know that “This is my Jaina,” as she plays with her big sis’s the care Jaina required. Jaina is still a frequent visitor of the Stollery, Rapunzel-like hair. though, but mainly for health maintenance: sleep therapy, tracheostomy Something both parents recognize is there is no comparing Jaina to her checkup, wheelchair needs, and X-rays to monitor her scoliosis (twisted or peers. “One thing I learned from having Jaina first is to not look at all the misshapen spine). charts – because Jaina never met those milestones, so I never could play “Jaina wouldn’t be here without the Stollery; and we need the support,” the comparison games with her,” Christina says. “I just knew that she was Christina says. “I volunteer with the Stollery’s Family Centred Care program going to go on her own path.” and it’s been therapeutic for me to find another group of parents that have Chad agrees. “She’s taught us both to be patient,” he says. “Because children with really extreme challenges. I had a lot of anger and grieving.” you just can’t rush her.” 24

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YOUNG

AMBASSADORS Kids giving back is a trend the Stollery Children’s Hospital Foundation is thankful to see grow BY Shelley Williamson

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LEX WEBB HAS A LOT TO TEACH OTHER KIDS

PHOTO: AMY SENECAL

about philanthropy. In fact, most adults could take a page out of the 13-year-old’s book, too. “When I was a kid I used to think ‘I will just wait until I’m older, like when I’m my dad’s age, but really you’re never too young to start,” says Alex, who has been fundraising for the Stollery Children’s Hospital Foundation since he was eight. “You can make the same difference as someone twice your age. It really doesn’t matter about age difference – as long as you’re committed to it.”

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PHOTO: AMY SENECAL

A NICE BALANCE: Don’t let Alex’s dedication to philanthropy make you think he isn’t just a regular teenager, too.

With a philosophy like that, it’s no wonder the Foundation just Stollery Family Day Classic hockey tournament. And some kids hold appointed Alex as the chair of the new Stollery Youth Philanthropy their own events via the Community Initiatives Program, such as Ambassadors, which was announced at December’s Snowflake Gala. manning lemonade stands. “It’s not because they are raising a ton With his first meeting under his belt (which he chaired), the young- of money; that’s not what this is about,” says Stacey. “This is about ster responsible for raising $50,000 for the benefit of other children at the passion that they have and their drive at 10-years-old. When they the Stollery to date is up to the task. start talking about all the things What he’s most looking forward to that they want to do over the year, “You can make the same difference is “being able to talk to other kids it’s really humbling.” as someone twice your age. It really who also want to make a differOne of those things is a social doesn’t matter about age difference – ence and being able to co-operate media campaign, which Alex has as long as you’re committed to it.” and put on cool events,” he says. already given Stacey his feedback And the Foundation is looking on. “He basically put me in my forward to him helming the group of seven 10- to 17-year-olds. “Be- place when I started talking about Facebook. He said, ‘We don’t use cause of Alex and who he is, because the amount of time he volunteers Facebook anymore. That’s for moms,’ ” she says with a laugh. Instead, and the amount of fundraising he does on his own is just phenomen- an Instagram element will be part of the campaign, as will videos al, he was announced as our Stollery Youth Ambassador for this year,” made by and about kids, in a “What the Stollery Means to Me” comsays Stacey Johnson, volunteer coordinator for the Stollery Children’s ponent, Stacey says. After drafting its own rules and regulations, the Hospital Foundation. group will be calling for peer video submissions. Some of the group’s members have a history of fundraising; Foundation staffers will oversee the committee to ensure the kids are others regularly give their time to events like Hair Massacure and the sticking to business, but for the most part the young philanthropists 26

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PHOTO COURTESY OF KAREN SHIN

will run the show, Stacey explains. “Really, they’re creating this. We have an annual plan for them but it’s really just the bones. They are filling in all of the things that they would really like to do and we have a few priorities that we want them to stick to.” Among those priorities is just that – being ambassadors. “They’ll be educating the community, making sure people know what it is that they’re doing and really encouraging other kids to do the same, whether it’s for the Stollery or just for their community,” says Stacey. That’s something Alex has done for years. In addition to collecting pledges and playing in the Stollery Family Day Classic, he has begun recruiting his peers as well, some who joined him at the Snowflake Gala where his new role was announced. “That was pretty cool,” he says. Alex comes by his giving nature honestly. His dad Mike is president of MacLachlan and Mitchell Homes, and his grandfather Ken always imparted the value of giving back, Alex says. “My dad’s always told me you want to leave the world better than when you came into it.” Stacey says Alex’s family has long been active with the Foundation. “Their whole family is pretty amazing to us, actually,” Stacey says. “They support us in a variety of ways; they volunteer, they sit on committees for us, and they’re huge donors as well. Alex is the way he is not only because he is a really great kid, but also because they brought him up promoting this.” Creating the new committee of youth ambassadors is just the beginning, says Stacey. “We want to build this youth philanthropy program. I feel like we would be doing the kids a huge injustice if we didn’t have them building it for themselves. Really, it’s them creating a program that they can be proud of and that they can feel good about promoting to their schools and their teammates.” And Alex, though exceptional, is not the exception when it comes to junior Edmontonians active with the Foundation, says Stacey, who estimates philanthropists from the younger set “in the hundreds.” “When I think about, for example, the Stollery Family Day Classic – it’s a hockey tournament, and there are hundreds of kids involved. Then there’s Hair Massacure. Thousands of people come down in February and are involved and shave their heads. And some of the schools have their own events. So this is just a way not to take away from what’s been going on, but to bump it up a few notches so everybody knows how fantastic our kids really are here in Edmonton.” One of those ways the ambassadors will get to shine is by organizing a golf tournament this September, the Mike Weir Miracle Golf Drive for Kids, and an adult tournament the next day. “It’s a great opportunity for them to see what goes into a lot of things that they’re already involved with,” says Stacey. “They’re literally going to be planning it from what we will be serving for the celebration barbecue to what activities we’ll have out on the holes, to how they want to promote this to their peers.” Stacey says the Foundation just wouldn’t be the same without having kids actively engaged. “Kids are our business. Kids really help us when we are creating programs to support them. With the hospital, there’s such an opportunity for crossover. A lot of them have been involved – whether it’s themselves or their siblings – and their family really is always going to be a part of the Stollery, and the Stollery is always going to be a part of their family. It’s just a really great connection and partnership. And they’re proud. These kids are so proud and the stuff that comes out of their mouth sometimes makes me think ‘How are you only 12?’ ” For Alex Webb, the reasons to get involved are simple, and hard to dispute: “You just get a lot of joy out of it. It’s a lot of fun and you get to meet a lot of new people,” he says.

CAMPUS CREW: Karen Shin co-created the Stollery Youth Committee at the U of A, which has raised $16,340 to date.

COLLEGE KIDS FOR CHARITY Karen Shin leads a volunteer group, which she co-founded three summers ago at the University of Alberta, to raise money for the Foundation through a variety of fundraising initiatives. But by the time she got to university, she was already experienced at flexing her philanthropic muscles. While still in Archbishop MacDonald High School, she created the Little Hearts, Big Dreams benefit concert for the Stollery. During her three years there, the group raised more than $33,000 for the hospital. The psychology major, now in her fourth year at the U of A, says she hopes the little charity she helped start, aptly named the Stollery Youth Committee will continue to get wings after she’s gone. Though it’s been around since 2011, the charity got its official status in early 2012. “That’s when we officially started our activities on campus,” she says. It has now grown to include eight executives and almost 100 members, holding events like bake sales, dog walking, a black tie Stollery Ball, waffle sales – and even a zombie run that saw students get pledges and have to navigate the U of A campus as a zombie or a human – with all benefits going to the Stollery. “We also host yoga classes and zumba classes and instructors donate their time,” Karen says. The group also encourages members to branch out and hold their own events for the charity, with the help of an executive. “That’s one of the things that a lot of members enjoy when they have time. They can take leadership of their events,” Karen explains. She said she hopes the group, like her high school charity before it, will continue long after her time at university. “We’ve held elections and are in the process of doing turnover and it’s going really great. That’s what we wanted, to be able to create something and pass it on, so it’s not just forgotten.” Karen says she’s encouraged by the support of her peers, despite their hectic school schedules. “It’s amazing to see how much support the students give and how willing they are to give back to the community. With student groups, it’s really hard to put aside the time to volunteer because school is so busy and that’s the priority.”

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LEADERS IN FAMILY CENTRED CARE: From left, Heather McCrady manages the Family Centred Care programs at the Stollery, while family members Dee-Ann Schwanke and Jodie Craven co-chair the Family Centred Care Council.

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feature HEROES

SHIFT in FOCUS BY Caitlin Crawshaw

Through its Family Centred Care Network, the Stollery is leading the charge towards more family centred pediatric care in Canada

PHOTO: BRITTNEY PAIGE

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ITTING AT THE BEDSIDE OF HER CRITICALLY ILL

needs of healthcare providers,” she says. “Now we know there are a lot newborn son, Jodie Craven often wished she could use her cell of efficiencies that can be made when we engage and build the system phone to text updates to family and take photos of her child. to include the needs of patients and their families.” “That made it hard because I was at the hospital and my husFamilies have a very different perspective than that of hospital staff. band wasn’t able to be there,” she says. Parents, for instance, know their child’s health history and can fill in the So when she joined the hospital’s Family Centred Care (FCC) Coun- staff about their patients’ current health situation. This is particularly cil and the Neonatal Intensive Care Unit Family Advisory Care Team important when patients are receiving care from many different doctors, (NICU FACT), the two leading groups of the FCC Network, Jodie was nurses, clinics and therapists. happy to see the groups had made Wifi access and cell phone use a Family members also notice when their child doesn’t appear to be repriority. Along with other members of the NICU FACT and key stake- sponding well to medication or predict whether an at-home treatment holders (such as Clinical Engineering and Infection Control), they ex- will be feasible. Being able to communicate this information to doctors plored and identified safe ways of using cell phones by the bedside. and nurses reduces parent stress, and also reduces medical errors and Relatively easily, new policies were put in place to ensure families have increases efficiencies, says Heather. contact with their supports while keeping a clean and safe environment Dee-Ann stresses that there are some important nuances to family for the children. centred care. Among those is the recognition of the fact that every family This is one of many innovative solutions borne of the Stollery’s family has a unique circumstance. And family centred care gives families the centred care philosophy, which sees families as valued members of their option to be involved in a way that best suits them and their child. child’s care team and in the operThe network’s scope is signifiations of the hospital. Five years cant. Members participate in the “Now we know there are a lot of ago, the senior leadership met with hiring of senior level staff and new efficiencies that can be made when we several families to ask how best to doctors. They incorporate their engage and build the system to include stories in the training of nurses integrate families into patient care, the needs of patients and their families.” and residents. Hospital design and and in the policies and practices of the hospital. “They determined we renovation projects include family needed to have a family centred care council to ensure a consistent and perspectives from the start. Reviewing and developing hospital processcollaborative way of engaging with families” explains Heather McCrady, es such as discharge planning and transitions of youth to adult care is a manager of Family Centred Care at the Stollery Children’s Hospital. priority. Members contribute to committees and working groups covWhat emerged was a 24-member council, comprised of about a doz- ering everything from pain management to safe access to breast milk. en families as well as several physicians, directors and managers, and Above all else the council recognizes the importance of families supfrontline staff. The NICU also created a similar group, the NICU Family porting families. In addition to other peer support groups, the Stollery Advisory Care Team. In response to the strong interest demonstrated initiated “Family Bedside Orientations,” which has families who have by patients and their families, health care staff and other stakeholders, “been there,” meet with families currently in the midst of their journey the Family Centred Care Network was established, and has since grown and not only help them navigate the hospital environment but also to 600 members. The focus is on collaboration. In the case of the cell provide tools to help them feel that they can participate in the care of phone policy, the solution was arrived at with parents, staff and phys- their child at the level they are comfortable with. icians around the table. “We developed it together,” adds Jodie. Since becoming involved in the council, Jodie says she’s seen sigDee-Ann Schwanke, who co-chairs the council with Jodie, notes that nificant changes at the Hospital – but also within herself. She and her the council is a way for families to work with staff and physicians. “We husband decided to get involved just months after the loss of their son, understand the reality that it isn’t just about making families happy – it who died from a congenital heart defect at six weeks of age. Even after has to work for the hospital, too,” she says. the birth of her second son, now a busy toddler, Jodie continues to be Heather notes that the perspectives of families are critical to the work a passionate participant in the council. “It hasn’t made my grief easier, of the hospital. “We know that the medical system was built around the but it’s somehow more meaningful,” she says.

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one TO WATCH

Sprouts of

HOPE BY Nadia Moharib

Alberta researcher and front-line doctor looks to broccoli sprouts as a possible preventer of cerebral palsy

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R. JEROME YAGER CAN TALK ALL SERIOUS ABOUT

his research into cerebral palsy. But when his voice softens as he recalls an encounter with a blind child with an inoperable brain tumour, it offers a poignant reminder he doesn’t toil in a silo. “She put her arms out and gave me a big hug and a smile in spite of the fact she couldn’t actually see us; it was comforting in the face of her discomfort,” he says. “She was strong enough to still have the compassion and to be able to bring a smile to her face and comfort to others.” Dr. Yager, professor and director of research for the University of Alberta’s department of pediatrics, says he is optimistic that research, albeit in the early stages, into cerebral palsy will make a difference for other children with challenges of their own. Ideally, it will show “natural products” (broccoli sprouts), when ingested by pregnant women will prevent the condition in their children or mitigate its severity. “The research is promising,” Dr. Yager says. “But I don’t want people to run out and buy broccoli sprouts quite yet.” Cerebral palsy is an injury to the brain that typically results in motor deficits affecting one or both sides of the body which can lead to developmental-related issues like learning disabilities and epilepsy. In North America, it appears in two to three per 100,000 live, full-term babies – or 10 times as high in preterm babies.

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In developing countries, Dr. Yager says, incidences are as much as 10 times higher. “Fortunately, the majority of parents have their children well integrated into society, and kids with cerebral palsy continue to lead normal and near-normal lives, which is great,” he says. “Our hope is to reduce the incidences and improve the outcome of children who do develop cerebral palsy.” To that end, his team is pursuing the possibility that broccoli sprouts might have merit – research done with a $150,000 over three years grant from the Alva Foundation, a $100,000 grant per year for five years from the National Centres of Excellence, and support from the Women and Children’s Health Research Institute. “Because it’s a simple approach to a complex problem,” he says. “They understand it because it’s food and it’s very doable in their minds.” Broccoli sprouts already have some street cred and have been looked at in cancer prevention and therapy, as well as prevention of hypertension and diabetes. The immature sprout is a very potent anti-inflammatory and antioxidant – 50 to 100 times more effective on that front than mature broccoli, Dr. Yager says. While there is much work being done across the country looking at the rehabilitation side, Dr. Yager says less is being done on the prevention front. 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: NICKI WOHLAND

EYES ON THE PRIZE: Dr. Yager’s team is hoping to take its work from bench to bedside, but the research is still in early stages.

Their research worked with animal models, creating conditions in pediatrics by 1986 and two years later earning his pediatric neurology Long-Evans rats which mimic similar hallmarks of cerebral palsy in speciality – works both in the lab and as a front-line doctor. The latter, humans. In one model using the rats, researchers created a reduction he says, is a constant reminder of the motivation behind his research. in blood flow from the placenta to the fetus, causing injury to the “I really enjoy the investigative part of doing research and the brain – not a lot unlike what would be seen in a human newborn as finding of answers, but being with patients is really a highlight in my “a result of placental insufficiency, day,” he says. “Because of some of which is a high risk factor for cerethe difficult situations we would “Doing pediatrics was a much more bral palsy,” Dr. Yager says. see with families and newborns, it heartfelt area for me than adult Once they had a newborn with gave me the drive to keep investimedicine – there is much more mild to moderate cerebral palsy, gating and keep looking.” researchers went a step further He also loves working with and hope and much more future doing with findings showing broccoli for children.“Even if they were not pediatrics because it’s the beginning sprouts, if ingested before the feeling well or sick ... they always of life, not the end of life.” newborn arrived, were effective in have a positive outlook and see preventing the injury.“This means the world in a very open and honthat the use of broccoli sprouts may permanently prevent cerebral est way,” he says. “Doing pediatrics was a much more heartfelt area palsy in those infants at risk for this disorder,” Dr. Yager says. for me than adult medicine – there is much more hope and much The team also looked at a second risk factor for cerebral palsy in more future doing pediatrics because it’s the beginning of life, not the humans known as a fetal inflammatory response or an infection end of life.” of the amniotic fluids. In those cases, by supplementing the diet of And he hopes to contribute. “Part of the reason I went into research pregnant rats with broccoli sprouts, researchers found it prevented was to add to the knowledge and innovation and progress that was newborns from being small at birth as well as reduced developmental clearly going to happen in brain research,” he says. “A great day is finddisabilities by about 60 per cent. ing some very positive results in the laboratory related to therapies or The hope is to take this work for ultimate use in the prevention improvement in outcomes, a foundation supported initiative.” of cerebral palsy in humans, he says. “It’s going extremely well,” a His work with children and their families is not without its rewards, cautiously optimistic Dr. Yager adds. “Going from the bench to the either. “I love the inquisitiveness and curiosity of doing research and bedside is always a challenge.” I love to talk to parents or the children and ... nowadays giving them a Dr. Yager – who finished his medical degree in 1981, specializing in bit more hope than we were able to do 10 years ago.” S TO L L E RY K I D S. C O M

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WHY I donate

Gear Up and BY Michelle Lindstrom

Give

How a welding company made huge profits for charity by selling hats and hoodies

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RANDMOTHERS WITH A CAUSE REALLY ARE A

In addition to the title of owner, Kristopher became Rodfather’s force to be reckoned with. Shelly O’Neil’s fundrais- general manager, Shayna as the site administration manager and ing efforts for the Stollery Children’s Hospital Foun- Shelly is the company’s operations manager. dation, in honour of her grandson Keegan Zukowski, Years later in a corporate meeting, the idea that Rodfather should are no exception. fundraise for charity was brought up. The best opportunity to do so In 2009, Keegan began Grade 1 and was diagnosed with Ewing’s came unexpectedly in 2012. “We bought some Rodfather gear (ball Sarcoma, a rare cancer that affects the bones and lungs. The primary caps and hoodies mainly, some toques and T-shirts, too) as Christcancer was found in his spine, but mas gifts for our crew and had other tumours were also detected “We were totally shocked the first year a huge response after that with in his lungs. At age six, with his people wanting to buy our gear,” just at how much response we had cancer in stage four, he was put on Shelly says. “We didn’t want to get for the gear and how many people an aggressive treatment program, into selling our gear; that wasn’t supported our cause.” including chemotherapy. what we did it for.” Co-workers and friends of Thus, the annual charity fundShelly’s, Kristopher Sustrik and Shayna Hansen, empathized with raiser began with leaving the charity of choice up to Kristopher, what she was facing as a concerned grandparent visiting the Stol- Shayna and the Rodfather crew. “I’m kind of biased with the Stolllery on a regular basis. “It’s not just him,” Shelly says. “There are ery,” Shelly told them. “You guys pick.” They chose the Stollery. thousands of kids – smaller and bigger than him – in a hospital bed The Rodfather owners ordered more of the big sellers, hoodies every day.” and ball caps, lugged the boxes of gear in a trailer to the Cenovus site In late 2010, Kristopher and Shayna were approached by an oil they were working on (with approval) and, during lunch hours and company about becoming welding contractors. They brought the after work, sold the popular items to Rodfather’s crew of about 30, idea to Shelly and the three of them went out on their own as co- as well as to others on site. “Our crew is so supportive, they helped owners of Rodfather Inc. – an on-site welding company that does with the sale and also helped organize it,” Shelly says. pile caps, structural welding, mechanical piping and maintenance Even with fixed prices, having a hoodie priced at $50 didn’t for oil companies. stop crew members from all companies offering $60 and saying, 32

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PHOTO COURTESY OF RODFATHER INC.

HOODIES TO HELP: A 2014 summer sale of Rodfather hoodies is in the works, with proceeds to go to the Stollery.

“Keep the change, it’s a good cause,” which many followed up Keegan was in a very aggressive treatment program from the fall of with a personal experience they had with the Stollery. “We 2009 to August 2010. After that, he was put on a three-month monalways follow up with a poster on site of how much was raised itoring cycle until doctors found something in November 2012 that and thank everybody for the support,” Shelly says. “For us, there’s they wanted to check into. It was a tumour on his lung and he went no cost difference whether we just hand it out or sell it, but it’s a back on a chemo program of four days on, four off early in 2013 – way of fundraising and a person is actually getting something for something his body struggles with. “Sometimes his blood doesn’t what they donate.” build up fast enough,” Shelly says, which meant surgery followed Rodfather donated all of its 2012 summer sale proceeds of $14,050, in April, removing part of his lung. “He was on chemo from April and $30,490 collected in 2013, to the Stollery Children’s Hospital to December (2013) and now doctors say they are happy with the Foundation to use in areas the results and they’re back to moncharity felt had the most need. itoring,” Shelly says. “There’s new technology every year. “We were totally shocked the Talk of a 2014 Rodfather sumEarly diagnosis sometimes is the key.” mer sale is in the works, but first year just at how much response we had for the gear and when is yet to be determined. how many people supported our cause,” Shelly says. “Every year we Shelly will ask her crew and co-owners which charity the proceeds feel like we’ve got to change it up, so if somebody bought a hoodie should benefit, but she says the Stollery is a likely choice – as all last year, they’re not getting the same one this year.” three owners and the crew are enthusiastic supporters. “There’s Rodfather raised funds in the past for other causes like Corporate new technology every year,” Shelly says. “Early diagnosis someChallenge and were successful but never on the same scale as the times is the key.” hoodies and hats summer sale. “When you first decide to fundraise, you don’t even realize what can come of it,” Shelly says. “Anything FUND THE FOUNDATION: If you’re interested that you can dream, you can make it work.” in contributing to the Stollery Children’s Shelly witnessed first-hand Keegan’s physical and emotional exHospital Foundation, visit stollerykids.com haustion from his cancer treatment and appreciates the activities and to find out how to donate. comfort the Stollery provides to keep the patients’ morale up, she says. S TO L L E RY K I D S. C O M

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corporate HERO

ON THE LINE: Chianti Café owners and staff have long done whatever they can, such as manning the phones for the Foundation’s annual Corus Radiothon.

PHOTO: ROMY YOUNG PHOTOGRAPHY

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Community

CHAMPION BY Lucy Haines

For well-loved Chianti Café owner Ken Rubuliak, giving back to the Stollery Foundation and other charities is part of his recipe for success

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“And that support is never in question. The staff at Chianti’s understands Their sense of community is simply part of who they are, with the importance of their donation – and they know why they do it.” no reward, thanks or accolades needed. Chianti Café has donated well over $90,000 through fundraising Like many a hero, Ken Rubuliak fits this description, contributions to the Stollery since 2003, but that doesn’t include though he doesn’t see himself that way. The well-loved owner of Chi- gift-in-kind gift certificates for the annual Corus Radiothon, Snowanti Café on Whyte Avenue (plus a second location on 40th Street) flake Gala, Slo-Pitch tournament, Row for Kids and Tee Up for Tots has been a supporter of the Stollery Children’s Hospital Foundation Golf Invitational. for some 15 years, donating in ways far beyond the monetary – in“All this, plus providing meals for our celebration events, we cluding donating his own time and serving up nourishment and staff really couldn’t do it without the generosity of Ken and his team. Ken to man the phones at the Foundais in tune with his community – tion’s annual Corus Radiothon. just look at those Fringe Festival “These are our neighbours. The “I don’t even remember how we hospital is in our backyard, so we feel posters across the restaurant,” first got involved, but it was before Lori adds. “We feel lucky to be connected because of where we are.” the hospital was even called the part of his family.” Stollery – it just seemed the right thing to do. These are our neighIn recent years, Chianti’s has become a Silver Sponsor of the Stolbours. The hospital is in our backyard, so we feel connected because lery’s Snowflake Gala, with monetary and gift-in-kind donations of of where we are,” says Ken. “I want all things to thrive in this area – it $30,000 a year. Ken says he has no plans to change the way he works makes us all successful.” with the organization – no red tape, no forms to fill out – just going In fact, in the over 25 years Chianti’s has been part of Old Strath- on a phone call’s notice, if needed, to garner support for the cause. cona, Ken has championed the likes of the Edmonton International “Life and health can be so random. As long as we’re able, we will Fringe Festival (every official Fringe poster hangs somewhere in the be part of the Stollery,” Ken says. “We’re committed; we’re lifers.” restaurant) and given generously and regularly to other community groups and local charities with donations for silent auctions, raffles STEPPING UP: Lorenzo Lushkja, who runs the and the like. 40th Street Chianti Café location, has been an But the Stollery has a special place in Ken’s heart, perhaps made active participant in Stollery Foundation events. more important when his two young daughters, one at age six and the other at 13, needed the care of the dedicated hospital staff. Ken doesn’t like to dwell on what he calls a “significant moment in all our lives,” except to say that the girls came out in great shape – validating what the now 56-year-old dad already knew – that the Stollery Children’s Hospital and the Foundation do great work, healing and advocating for local children and those from northern Alberta, Northwest Territories and beyond. “People always want to help children, and our staff and my partners are all family-oriented, so it’s an easy sell,” Ken adds. With his fellow owners and through another Chianti’s location in Calgary, the group works with the children’s hospital in that city, too. Lorenzo Lushkja runs the Chianti Café on 40th Street in Edmonton, and in his years with the company, he says Ken – “the big guy with the social conscience,” – has always fostered a sense of community among staff. Now with a young child of his own, Lorenzo says he has a better appreciation for why Ken and his staff do what they do for the Stollery – from donating a day’s profits at the restaurant, to preparing and delivering food for Foundation events ranging from a softball tournament, to volunteer appreciation dinners. “My five year-old daughter even helps at the Corus Radiothon each year – it’s truly a family affair,” Lorenzo says. “And Ken deserves the recognition. When you do good things, good things come back.” The modest Ken, who admits he likes to stay in the shadows wherever possible, calls the relationship with the Stollery a great one because the Foundation allows him to manage his involvement – he and his staff do whatever they can, whenever they can. “We arrange food for volunteers at Foundation events with a phone call. And since we’re a large and fairly busy restaurant, it doesn’t take too much to work that request in,” he says. Lori Finck, development officer with Corporate Giving for the FOR MORE INFORMATION: Are you a Stollery Children’s Hospital Foundation, says the relationship with community champion? Visit Stollerykids.com Ken and Chianti Café is a treasured one.“Ken’s always there 100 per to find out how to donate or volunteer. cent – he and his whole team are passionate supporters, so we try to accommodate and give them as much notice as we can,” Lori says.

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PHOTO: ROMY YOUNG PHOTOGRAPHY

PHOTO: ROMY YOUNG PHOTOGRAPHY

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OME PEOPLE JUST GIVE WITHOUT BEING ASKED.

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With your support, this year’s event raised more than $375,000, raising more than $1 million to date! As part of the Critical for Care campaign, the Stollery Children’s Hospital Foundation has a goal of raising $400,000 specifically for ophthalmology – the branch of medicine that deals with the anatomy, physiology and diseases of the eye. It is a diverse and rapidly advancing field, and the Stollery Children’s Hospital requires new equipment to assess eyes and vision. Funds raised at this year’s Stollery Family Day Classic will help fulfil this goal.

Thank you to our volunteers, participants, donors and sponsors! Major Sponsors:

ATB Financial, Go Auto, Murray’s Trucking, Mac & Mitch Homes, La-Z Boy Furniture Galleries, Serdachny Powerskating & Hockey

Junior Sponsors: Dolce Vita Homes

For more information, visit:

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al he he at

5 11:49 AM

BY Colleen Biondi

HOSPITAL portrait

In the Genes Pediatrician-turned-geneticist helps his patients, young and old, understand the molecular root of health conditions clinical geneticist at the Stollery Children’s Hospital, has been committed to the welfare of children and their families. Originally a pediatrician, he became curious about rare and difficult-to-diagnose conditions and began to study how the body functions at its finest point – the gene. Since the mid-1980s, he has been getting to the molecular root of complex conditions and has given hope to vulnerable and medically fragile children and their families. Born in the county of Yorkshire in northern England, he lived as a child in Sierra Leone and the Bahamas before returning home to take medical training at the University of London. After a decade-long pediatric practice, he studied medical genetics in Cardiff, Wales, and in Vancouver, British Columbia. He has called Edmonton home since 1988. These days he helps patients of all ages (but mostly children) understand genetic ties to their health and associated implications. There are four types of cases that other medical professionals refer to him: people whose symptoms might be due to a genetic condition; people wondering if they have the gene associated with a family disorder; pregnant women with abnormal ultrasounds who require further prenatal diagnosis; and children with metabolic conditions (these patients cannot use proteins, carbohydrates or fats normally) through Alberta’s Newborn Metabolic Screening Program where newborns are screened for up to 17 conditions in the first week of life. In Dr. Bamforth’s time in the field of genetics, there have been major advances in two areas: screening for disease (looking for inherited disorders in healthy individuals before they develop signs of the disease) and molecular diagnostics (the ability to examine the gene itself). Typically, tests are conducted using the patient’s blood or urine. Alberta Health Services operates two mainstream clinical molecular laboratories, one each in Edmonton and Calgary. Lab staff take eight to 12 weeks to analyze samples and generate molecular results. AHS also oversees the newborn screening laboratory, which provides results within days of birth. With metabolic disorders, timely screening is key. “The children will become sick and will remain sick until you find out what is wrong with them and treat them accordingly,” explains Dr. Bamforth. In adults, the issue can be more complex. For example, does anyone want to know that he or she has the gene for Huntington’s disease, if no symptoms have yet appeared? S TO L L E RY K I D S. C O M

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PHOTO: AARON PEDERSEN

SINCE 1975, DR. STEPHEN BAMFORTH, A

CONNECTING THE DOTS: Dr. Stephen Bamforth helps find the genetic link to complex conditions. Decision-making in this case is best made with the patient and family, the genetic team, family doctor or specialist. Panel testing will soon be available to investigate multiple diagnostic possibilities simultaneously. In five to 10 years, professionals will be able to screen the entire genome. Although still very expensive, the cost of molecular testing is falling and should become more widely available. There are limitations. Only 20 per cent of children with autism spectrum disorder have a clear, known genetic link. In other cases, the condition is due to genetics and the environment. There are also myths linked to genetic screening. “The biggest misconceptions are that we promote terminations (of pregnancy) and that we can diagnose everything,” Dr. Bamforth says. Dr. Bamforth says he is in pre-retirement mode and looking forward to spending more time with his wife, grown children and new grandchild. In his spare time, he sings in a choir and plays handbells. The next generation of clinical geneticists will bring fresh eyes and new energy to the dynamic technology associated with the work, he says. “It’s time for the younger folks to step in.” And what will they be working on? Genetic factors associated with things like high blood pressure and cardiovascular disease. Healthy patients who are predisposed to developing these conditions could undertake a prevention plan. Testing of this type will help people with these “garden-variety conditions” to personalize treatment and management, he says. “This is where the real future lies.” S P R I N G 2 0 1 4 | HEROES

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THE LAST word

BY Poonam Madan

In Memory of Priya

PHOTO COURTESY OF SOULUMINATION.

A mother recalls her daughter’s short life and her time at the Stollery

FAMILY PORTRAIT: Mom Poonam and dad Mike Madan are all smiles in a moment with the whole family together. Seated in front are (from left) a then-six-year-old Mathan, Priya, and Mehul, who was three at the time.

OUR SONS MATHAN AND MEHUL WERE SO happy and excited to have their baby sister Priya in their lives. Priya was born on March 2, 2010, and she spent three months at the Stollery Children’s Hospital before she could come home. The boys, who were five and two when she was born, patiently waited for their sister to come home to play with her. My husband and I would take turns spending time with Priya at the hospital, and the boys went from having two full-time parents to one parent at home as we took turns with Priya. They loved coming and visiting their sister at the hospital but they were much happier to have her at home. When she was at home it was not uncommon for them to come to the full day appointments. Being siblings, they were always very supportive of their baby sister. Later that year, Priya got sick again and was admitted to the hospital. She spent another five months at the Stollery. Again, the boys patiently waited for their sister to come home and have the five of us together again. At night I would gaze out of the hospital window and wish to have my husband and children with me in one place as it was hard to be apart for so long. Children surprise us with the amount of love they have inside of them. One time I was out with my sons and a stranger asked me if I only had these two children. 38

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My little five-year-old Mathan responded, “No, we have a baby sister too, but my dad is with her at the hospital because we would never want her to feel alone.” My heart was so happy because my boys were supportive and that we were going through this journey as a family of five together. Priya was 18 months old when she died at the Stollery. I remember the monitors beeping off and everything moving so fast. I believe she waited for her big brothers to be there with her; Mathan and Mehul made it there just in time to say goodbye to Priya. Mathan held his baby sister’s hand and said, “I loved being your big brother and having you as my baby sister. I know that God will take very good care of you for me.” Moments later, she died in our arms, and that was the last time the five of us would be together. That night she left us with a deep, strong love and hope that we would heal as a family, cherishing her spirit every day. My sons know just how much the hospital does for other families like ours and so they fundraise in Priya’s memory. They do things like donating money at Christmas, putting half their birthday money aside to give to the Stollery, and sometimes even do things like manning small lemonade stands in her memory. They have empathy for others even though they have gone through so much. Their love has helped our hearts immensely and I know their baby sister Priya would be proud of her big brothers.

Big Brotherly Love I will never forget the day that little Mathan shared a philanthropy presentation with his Grade 3 class. I watched in awe as he used the clinical explanation of the many departments that looked after Priya, some of the health issues she faced, and how it felt to be at the Stollery. I was inspired as he explained how he had raised funds to support kids at the Stollery and read from his notes at a level beyond his years. I was left with a lump in my throat. He is such an amazing public speaker already. At the end of his presentation, he asked if anyone had questions. A boy in the first row shot his hand up and asked “Do you need a hug?” Mathan just smiled and said, he was proud to share this with his class. - Paula Gibson Griffith, Stollery Children’s Hospital Foundation development officer

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Sunday, June 8th, 2014

Gold Bar Park, 4620 - 105 Ave. 1km or 5km walk

! Y A D REGISTER TO

8 a.m. Registration 10 a.m. Race Start

10:30 a.m. - BBQ, face painting, crafts, games and entertainment

TO REGISTER:

www.walmartwalkformiracles.ca 1-888-475-6565

Make-A-WishÂŽ grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.

Do you know a child battling a life-threatening medical condition? We rely on referrals to grant wishes to children with life-threatening medical conditions. By taking a few moments to fill out an online referral form at www.makeawish.ca/refer-child or call our referral line at 1-866-944-9474 ext. 203 you can change a life and make a child’s wish come true.

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Join us at the

2014 Mike Weir Miracle Golf Drive for Kids

September

14th & 15th, 2014 For more information visit:

stollerymikeweirmiraclegolfdrive.ca

PM 40012957

P

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HEROES - Spring 2014  

HEROES magazine is the quarterly publication of the Stollery Children's Hospital Foundation.

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