STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION • SUMMER 2014
Free Spirit STOLLERY KID JESSIE RICHARDS IS ALL SMILES AND BREATHING EASIER
TEAM PLAYERS Working together is critical in the OR
A GUT REACTION CHILDREN’S CHAMPION Dr. Susan Gilmour wants kids to thrive post liver transplant
One pediatric gastroenterologist hopes to link bacteria to bowel disease
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PLUS: DIARY OF A PLAY LADY; PART 4 OF OUR GIVING GUIDE
Stollery Week 2014 Presented by:
Because of your amazing support, we raised $300,000 to fund specialized pediatric equipment, world-renowned research, and sub-specialty education and training programs to help more kids at the Stollery!
THANK YOU!
Special thanks to our sponsors & partners!
Thank you for supporting the
contents SUMMER 2014
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Stollery Family 12 THE FAMILY WAY
Departments 5
For Rod and Catherine MacKenzie, giving back comes naturally
A message from the president and CEO of the Stollery Children’s Hospital Foundation
22 UNDER THE MICROSCOPE
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Dr. Eytan Wine is helping get to the bottom of inflammatory bowel disease markers in children through dual roles of clinician and researcher
11 TECH FILES
A collaborative network helps coordinate and perform 9,000 surgeries a year
Telehealth gives patients real-time access to Stollery doctors from remote locales
26 MAKING A DIFFERENCE
37 CHILDREN’S CRUSADER Dr. Susan Gilmour wants to improve the lives of pediatric liver transplant patients
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FOUNDATIONS OF LIFE Racing for a Cure; Girls’ Day Out; Dirty Birds Charity Hockey Tournament; Birthday Fundraisers; and more
24 A TEAM EFFORT
Dr. Hien Huynh leads a multi-disciplinary team specializing in GI and hepatology
IT’S ABOUT THE JOURNEY
30 MILESTONE
Features 14 COMING UP FOR AIR Eight-year-old Jessie Richards has a new lease on life post-tracheostomy
19 HEALING IN HARMONY Music brightens the lives of young Stollery patients
28 GIVING WITH IMPACT Hiring a specialist is the best first step with planned giving
The legacy of Bob and Shirley Stollery lives on through their foundation
32 CORPORATE HEROES WorleyParsonsCord workers use their skills and generous spirit to help kids in need
34 WHY I DONATE Nitza’s Pizza owner pays tribute to his niece through his generosity
38 THE LAST WORD Diary of a Play Lady
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ON THE COVER: Jessie Richards is a breath of fresh air PHOTO: Aaron Pedersen / 3TEN S TO L L E RY K I D S. C O M
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SUMMER 2014 VOL 2 • No. 3 STOLLERY CHILDREN’S HOSPITAL FOUNDATION ASSOCIATE EDITOR: ALEESHA JEX PRESIDENT & CEO: MIKE HOUSE, MBA, CFRE Stollery Children’s Hospital Foundation BOARD OF TRUSTEE: CHAIR: MARSHALL SADD, Lloyd Sadd Insurance Brokers Ltd. VICE CHAIR: RICHARD KIRBY, MBA, Felesky Flynn LLP PAST CHAIR: ZAHRA SOMANI, B.Ed, MBA, Pirani Group LAURIE ANDERSON, CMA, WAM Development Group RICHARD BALAN, RTA Holdings Ltd. JONATHAN CHIA, CA, Melcor Developments Ltd. HERBERT CHUI, SIF Asset Management Group Inc. LINDSAY DODD, MBA, Savvia Software Inc. DOUGLAS GOSS, Q.C., Bryan & Company LLP NOAH JONES, BA, CFP, CLU, Sorrell Financial ROD MACKENZIE, Legato Resources Ltd. DR. RAYMOND MUZYKA LEIGH-ANNE PALTER, MBA, Conroy Ross Partners GORDON PANAS, CA, PCL Constructors Inc. STEPHEN PETASKY, The Luxus Group DR. WILLIAM J. SHARUN MICHEAL WEBB, MacLachlan and Mitchell Homes Inc.
PUT YOUR MONEY WHERE THE MIRACLES ARE. Give kids like Jordan every chance to live better.
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: Caitlin Crawshaw, Pat Fream, Lucy Haines, Elizabeth Hames, Jen Janzen, Robbie Jeffrey, Sue LeBreton, Brynna Leslie, Christy Nich, Mike Skrypnek, Dianne Tuterra CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Joanna Begg Pattison, BB Collective, Christy Dean, Linda Hendry, Ron Pawlowski, Aaron Pedersen, Tannis Peterkin, Amy Senecal, Kevin Tuong, Nicki Wohland, Romy Young Photography
Children’s Miracle Network® raises funds for 170 children’s hospitals in North America, 14 of which are in Canada. These hospitals, in turn, use the money where it’s needed the most. When a donation is given, it stays in the community, ensuring that every dollar is helping local kids.
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
Learn more at ChildrensMiracleNetwork.ca
Publications Agreement # 40012957 Return undeliverable Canadian Addresses to: Stollery Children’s Hospital Foundation 1502 College Plaza, 8215 - 112 Street, Edmonton, AB T6G 2C8
FOUNDATION message
It’s About the Journey FROM MILE 0: Riders, from left to right, Matthew Decore, Mike House, Alex Webb, Micheal Webb, Ryan Drury and Nick Lees stop at a lunch stop during the Haida Gwaii Totem Tour. For more on the event, turn to page 12.
WHEN A BABY IS BORN, PARENTS LOOK forward to each first – followed by a long line of seconds, thirds and so on. I remember my daughters’ first words, first steps, first days of school. Each first builds on previous steps, as journeys often do. As they grow into young ladies, my girls begin to choose their own next steps. Where will they lead? Where will their journeys take them? Will they become artists? Teachers? Doctors? Only time will tell. Although many parents share my memories of first words, first steps and first days of school, most Stollery parents look forward to a whole different set of first steps in their child’s journey – such as the first time out of the incubator, first time they can hold their child, or the first time they can take them home. As these medical first steps turn into longer journeys of care, we’re fortunate to have the many specialty clinical and surgical services that the Stollery Children’s Hospital provides during the lifespans of our children from birth to late adolescence. It’s a long continuum from hightech prenatal diagnostic services, critical care and acute care services to restorative care and rehabilitation, and sub-specialty ambulatory follow-up in the community. Everyone’s journey is different, and with the community’s support, the Foundation walks with our Stollery families on their journeys through the hospital. The ups and downs, the blind corners, the falls, and the times patients and families get back on their feet: we know our donors S TO L L E RY K I D S. C O M
PHOTO: RON PAWLOWSKI
BY Mike House, MBA, CFRE President & CEO, Stollery Children’s Hospital Foundation
care about Stollery children and share the roadmap in each family’s journey. If you’re a parent, grandparent or child who has yet to encounter these crossroads, we hope the stories you read in the pages of Heroes keep you moving forward. Whether you supported those who rode shotgun in highend, luxury cars that zoomed around Castrol’s new track (more about Racing for a Cure on page 6); went to Yellowhead Mile 0 in Masset, Haida Gwaii and rode your bike 1,760 kilometres through the winding, mountainous Many parents remember their highway to Edmonton child’s first words and steps. (more about Rod’s story on page 12); or spent Stollery parents look forward to different firsts. much of your life’s journey at the Stollery (read more about Jessie on page 14) – every journey matters. We truly appreciate your continued support of our hospital through the Foundation and for taking the time to read about some truly remarkable journeys. Thank you and have a wonderful summer and fall.
CALL TO ACTION: We’d like to hear about your Stollery journey. Email the Foundation at info@stollerykids.com and share your story. S U M M E R 2 0 1 4 | HEROES
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PHOTO COURTESY OF DIGITAL MOMENTS PHOTOGRAPHY
High-Octane Charity
MIKE CHRISTIANSEN OF VENUS EYE DESIGN HAS AN EYE FOR detail, and it struck him as somewhat odd that some fundraisers don’t include participation from those they’re meant to help. “There were a couple of us from the community who wanted to give back,” he says. He thought of ways in which he could contribute, and as a Ferrari owner, he was aligned with a high-octane idea. “A group of us thought, ‘How about if we get some of these kids that are able to come out of the Stollery and we actually bring them to a race track and give them a day full of rides?’” Buckle up – the story of Racing for a Cure is a wild one. In 2012, just two years ago, the inaugural committee-driven Racing for a Cure was held at Stratotech International Raceway in Fort Saskatchewan. Organizers had about nine cars participate, including four exotics as well as Porsches and Corvettes. With only a few newspaper ads, they brought in a phenomenal crowd of just under 1,000 people. After collecting donations of nearly $80,000, they imagined the kind of road this event could take, and began to plan for the second year. Moving the event to the Castrol Raceway near Nisku which donated the use of the track for the second and third years, Mike spoke to more exotic car owners. “We had about 30 cars in 2013, all exotics” he says. “With Ferraris, Lamborghinis and Maseratis, we stepped it up a notch and ended up raising $349,800.”
“We get businesses to donate everything from toothbrushes to trips to Banff,” Mike says. “We auction those off at a gala, and that’s how we raise a lot of funds, too.” Last year, the premier donation to be auctioned off was a trip in a private jet to the Barrett-Jackson car auction, all expenses paid. It brought in about $18,000. In addition, every Stollery kid that attended received a VIP bag full of donated goodies. Drivers of the cars – who donated their time and each paid a $1,000 donation for an entry fee – received bags, too. The 2014 event, which also raised more than $300,000, was held on June 21 and featured about 50 exotic cars and more businesses donating bits and pieces to the kids’ bags. “Our goal,” Mike says, “was to make the kids feel like they’re the most important person that day.” Mike certainly knows that feeling. Mike has a long history with the Stollery. He was told that in all likelihood, he’d only live until he was 18 years old. Mike was born with Tetralogy of Fallot, a congenital heart defect which caused him to have heart bypass surgery when he was just three years old, and again when he was five. They did open-heart surgery for the third time when he was 17. Mike has been with the Stollery since before it was even named the Stollery. Racing for a Cure is truly the culmination of a lifelong relationship between the hospital and one of its patients.
Birthday Fun-raisers WHEN A CHILD MAKES THE DECISION TO DONATE TO charity, it can lead to a lifelong sense of community awareness and selflessness. Such is the case with nine-year-old Elle and six-year-old Keira Gilliard, sisters who have been organizing fundraisers for the past three years and show no signs of slowing down their efforts. In 2011, the sisters along with some of their friends, held a lemonade stand and penny drive in their Terwillegar community, and raised $415 for the Stollery Children’s Hospital Foundation. “Elle started the fundraisers, and a couple of her friends joined her,” says Jenn Gilliard, the girls’ mother. “She’s a caring, compassionate girl, and she’d heard about the Stollery Children’s Hospital Foundation through her school, where one of the students was receiving care from the hospital.” 6
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In 2013, the girls made greeting cards, painted canvas, sold hot dogs and painted faces. That year, they raised an incredible $1,840 for the Neurosurgery Kids Fund, through the Stollery Children’s Hospital Foundation. “This year, the girls decided to combine their birthdays because they understand how lucky they are,” Jenn says. “They have access to a lot of other programs and opportunities, and they’re healthy girls. If they ever would have to go to the hospital they too would want the kind of help that the Stollery gives.” Elle and Keira are happy to donate their efforts to the Stollery. “We’ll hear of someone who needs care at some point,” Jenn says. “At one point, my girls may need help. And it’s important to think of other children who don’t have the same opportunities as yours.” 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
Meals for Charity IF YOU CAN RAISE THOUSANDS OF DOLLARS WITH A MERE couple weeks of planning, what could you do with a whole year? This June 15 through July 14, participating KFC locations donated a portion of their proceeds to the Stollery Children’s Hospital Foundation through the Children’s Miracle Network. When customers picked from an assortment of KFC menu items or purchased a Children’s Miracle Network Balloon, they contributed to one of North America’s largest charities and, by extension, Edmonton’s world-class children’s hospital. Last year’s inaugural event raised $24,000. “It was designed and then
it hit the road in two weeks,” says Carolyn McKenzie, senior development officer with the Foundation. “This time around, we’ve been able to plan for a year.”
YOUR TURN: Got an idea for a fundraiser? Contact the Stollery Children’s Hospital Foundation’s Community Initiatives team at 780-433-5437.
FUNDRAISING IN STYLE KRISTEN BELLAND FOUND A WAY TO MAKE FUNDRAISING
PHOTO COURTESY OF KRISTEN BELLAND
as comfortable as it gets. Disguised as a regular girls’ day out – complete with mini spa treatments, crafts and shopping – her fundraiser is a finely-tuned machine that has raised more than $5,000 in just three years. Kristen, of Breton, Alberta, organized a day of relaxation, enlisting local practitioners for manicures, pedicures and facials, and she invited sponsors both small and large to sell their products and donate a percentage back to the Stollery Children’s Hospital Foundation. “The support I get is awesome,” Kristen says of past donations from companies, including Home Hardware, Rocky Mountain Soap Company and Wetaskiwin’s Shanti Wellness Centre. The sponsors for the 2014 event counted among them Essentials Spa & Wellness, Alberta Egg Farmers, Haida Realty and Valerie Jane Morrow, of Plain Jane Pretties and See Jane Knit, whose son spent time at the Stollery as an infant. “In the morning, we do a potluck breakfast and lunch so we can keep costs low,” Kristen says. “We charge minimum for people to come here, so they can donate maximum to the Stollery.” Everyone donates their time, and they all make contributions to the Foundation. “It’s a lot of family and friends,” she says. “The morning is spent doing a workshop of some kind. This year, Jessica Radis with Pure Bliss Esthetics taught us how to make homemade scrubs.” Lunch follows, and so does a round of handing out donated items and door prizes. What drew Kristen to organize this event for the Stollery Children’s Hospital Foundation are thoughts of her family and friends, who have spent time at the hospital with their sick kids. “The Stollery is such an important thing to have in our province. If it wasn’t around, it would be a huge loss,” she says. “I’ve never had to take a child RAISED to the Stollery, but it’s a good thing FOR THE whether you need it or not. Even if you STOLLERY! don’t know them personally, you know someone who has used it.”
$5,000
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EVEN THOUGH THE FIRST YEAR OF THE DIRTY BIRDS CHARITY Hockey Tournament was a resounding success, Chris Branco felt participants could step up their game for the second one. So this year members of the Stollery host team, the Dirty Birds, agreed to do something bold: they played with a Stollery kid’s name on the back of their jerseys, and tried to get to know those families. “We had a closer connection to the organization this year, and to the other families that were affected,” adds Chris of the move to sport the kid-inspired jerseys. “It meant a lot more to our players than just a hockey tournament.” Chris already had a strong connection to the event, which supports the Neurosurgery Kids Fund and the Stollery Children’s Hospital Foundation, after helping create the tournament in honour of his nephew, Joshua Da Silva, whose life has been changed by the Stollery. The Dirty Birds Charity Hockey Tournament has far surpassed its fundraising goals for the Neurosurgery Kids Fund. “Our first year, our goal was $15,000 and we did $65,000. This year, we got $101,000,” says Chris. On May 23, Average Joes in Sherwood Park hosted the silent auction and gala, which sold 300 tickets, ultimately raising about $22,000 in donations for
the Neurosurgery Kids Fund. Some of the glitzier items up for bid included two Team Canada jerseys from the 1996 team, signed by Ryan Smyth and Eric Brewer. Other donated items included jewelry and spa packages, running the gamut in terms of products and totalling more than 100 items. The following day, the tournament was held at Argyll Arena. This year, the same local media celebrities returned. “Less than a week after last year’s event, they committed to this year’s,” says Chris. “They’ve all been huge supporters of it.” Adding to the excitement was the increased media presence. Every news outlet wanted to speak to someone about the tournament, Chris says. “But the biggest difference for us was the connection with the families.” “It’s easy asking for donations and getting people to jump on board when you say ‘the Stollery,’” Chris says. “Everyone has been affected by it, and everyone knows what we have in our backyard. The Stollery is the best hospital in the world for children. You’re supporting the cause and all the money goes to the hospital. You can see what we have in our backyard, with the technology and the people that work there. It’s first-class.”
PHOTO: TANNIS PETERKIN
A SWEET SUCCESS FOR MEADOW BLOUIN, A 12-YEAR-OLD STUDENT AT SAINT Luke Catholic School, friendship is paramount. While her friend was in the Stollery Children’s Hospital having a major surgery, she saw other children who were in much more critical shape, and she told Meadow about her experiences. “Meadow was talking to her friend about the people that she met when she was in the hospital,” says her mom, Cathy Blouin, “and all the different things that happened during her stay. That really inspired Meadow to contribute.” When she found out that the donations go directly to helping the children in the hospital, she was motivated to help in whatever way possible. Meadow chose to sell bags of candy that she’d prepared and organized a small bottle drive. It was a sweet success – she raised $184. Meadow attributes her inspiration for fundraising to her teacher, Miss Evans. “Her teacher gave her the inspiration to think about doing some fundraising for others, and to give to others to make their lives better,” Cathy explains. Still, Meadow put in most of the hard work. “She used her own money and bought individual baggies, and then she meticulously made all of these candy bags,” Cathy says. “The majority of the money she raised came from 8
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PHOTO COURTESY OF THE DIRTY BIRDS CHARITY HOCKEY TOURNAMENT
Dirty Birds Take Flight
the candy sale, so at a dollar per bag, that’s a lot of bags!” Meadow even had her classmates putting in orders for how many bags they’d want the next day. With kids like Meadow organizing fundraisers for the Stollery Children’s Hospital Foundation, there’s much to look forward to for the future. Who knew a sweet tooth could do so much good? 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
PHOTO COURTESY OF OF THE OGRODNICZUK FAMILY
COMMUNITY GROWTH BY THE BUSHEL THE SPIRIT OF CHARITY IS growing in Alberta. The Grow with Your Community initiative, in its third year, has raised RAISED $27,282 to date, by engaging FOR THE canola and wheat farmers STOLLERY! throughout rural Alberta in an ingenious fundraiser: BASF Canada and Andrukow Group Solutions & Partners provide producers with new technology – most notably, BASF’s Headline fungicide – and expert agronomic support, and the growers analyze their treated fields at harvest. The increase in production is donated on behalf of the Stollery Children’s Hospital Foundation. “We provide the producer with enough product to do 80 acres,” says Ernest Nycholat of BASF, adding that producers then donate revenue from every increase in yield to the Stollery. “We benefit as a company by people using our product and finding out how it works, and we are able to generate data to show other producers.” BASF also selects the grower with the highest yield increase, and matches it. Enrolment in the program nearly doubled for 2014. For the first year of the program, says Ernest, the producers could donate to the charity of their choice. The Stollery, however, became the go-to beneficiary after one of the farmer’s children told his story about the hospital. It left a lasting impression on Ernest. “I’ve had a child in the Stollery,” Ernest says, “for something very minor. But I was impressed with the facility and the staff. The kids were the prime attention of the front-line staff. And as I’ve worked within the farm community, I’ve heard tons of stories about the Stollery. Everybody seems to be connected.” This was the catalyst, he says, for focusing solely on the Stollery and concentrating donation efforts to the hospital. “It wasn’t very hard to say ‘let’s get behind the Stollery Children’s Hospital Foundation 100 per cent.’”
Circles of Gratitude IT BEGAN SIMPLY ENOUGH: NATALIA VALDES OGRODNICZUK MADE rainbow loom bracelets and gave them to her family and friends. Natalia, however, who was born with a cleft lip and palate and has been to the Stollery Children’s Hospital several times for multiple surgeries, had bigger things in mind. Natalia’s father, Marcos Valdes, remembers how it started. “Last year, for her birthday, she asked for the rainbow elastics. Soon, all of us, her mother, her little brother and I were all wearing these bracelets that she’d made. She said she wanted to sell them, and when she made over $30, we asked what she wanted to do with the money. She said she wanted to give it to somebody.” Marcos told her he’d double whatever she made. Natalia continued to sell her bracelets. One day, while Marcos got a haircut, the hairdresser couldn’t help but notice them. Soon, the hairdresser told her coworkers, and the employees told their clients. In one day, they raised over $100. Both Natalia and Marcos have profound connections to the Stollery. For Natalia, her first operation came the day after she was born. Three months after that, she had another. Marcos, meanwhile, just won a competition among all the ATB Financial branches in Edmonton, which competed to raise money for the Stollery. “We had a goal of $2,500,” Marcos says, “and we ended up with $5,300.” Members of his Jasper Place branch held garage sales and sold hot dogs. They’re determined to win again next year. There’s another reason why Marcos feels so compelled to donate to the Stollery Children’s Hospital Foundation. “I’m originally from Chile,” he says, “and we always talk about how important it is to give to people that don’t have these things, and to give to institutions that can help kids like this. I come from a country where you would have to pay for everything. We’re always trying to teach our kids that to continue what you’re getting, you have to give.” He has nothing but good things to say about the folks at the Stollery. “Even when we go now,” he adds, “they recognize Natalia, and they always say, ‘We’ve known you since you were just a few months old!’ ” For a girl with such big ideas, Natalia’s not stopping at helping kids – she wants to help animals, as well, by becoming a marine biologist when she grows up.
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PHOTO: JOANNA BEGG PATTISON
$27,282
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Save the Date The Stollery Children’s Hospital Foundation is honoured to have caring people in the community creating events with proceeds supporting the Foundation, benefitting sick and injured children. We hope you will have an opportunity to enjoy or participate in these activities. For more information, and a complete list of upcoming events, visit stollerykids.com. ROW FOR KIDS
THE MIKE WEIR MIRACLE GOLF DRIVE FOR KIDS DATES: September 14 and 15, 2014 LOCATION: Edmonton Country Club, 6201 Country Club Rd NW In 2007, The Mike Weir Foundation and Children’s Miracle Network joined forces to begin a concerted national effort to raise $10 million for pediatric healthcare across Canada. This September, the Mike Weir Miracle Golf Drive for Kids tournament comes to Edmonton! Funds raised will help fund the Stollery Children’s Hospital Foundation and Stollery operating room expansion. Visit stollerymikeweirmiraclegolfdrive.ca for details.
DATE: September 6, 2014 LOCATION: Telford Lake, Leduc Come out to Telford Lake in Leduc on September 6 to cheer on the teams that have been training all summer. Enjoy lunch and family-friendly activities while the teams race to the finish. Visit rowforkids.com for details.
RIG CRUISE SHOW & SHINE DATE: September 13, 2014 TIME: 11 a.m. to 4 p.m. LOCATION: 8210 McIntyre Road, Edmonton Join Katch Kan Ltd. for its second-annual Rig Cruise Show & Shine. There is free admission, a silent auction, and a 50/50 draw. View all of the cars, trucks, and bikes then vote for the vehicle you like best!
NICU FUN RUN IN THE PARK DATE: September 20, 2014 TIME: 1 p.m. to 5 p.m. LOCATION: Gold Bar Park, Picnic Site #1, Edmonton The Northern Alberta Neonatal Program is pleased to host the second-annual NICU Fun Run in the Park in support of the Stollery Children’s Hospital, Neonatal Research and Education. There will be barbecue, kids’ activities, music and more. To register, visit events.runningroom.com/site/?raceId=10733
TIM HORTONS SMILE COOKIE WEEK DATES: September 21 to 27, 2014 LOCATION: Participating Tim Hortons locations
BIKE THRU THE NITE
Purchase cookies and spread smiles in support of kids. Visit timhortons.com to learn more.
DATES: September 13 and 14, 2014 TIME: 10 p.m. to 5 a.m. LOCATION: Sherwood Park
MERRIOTT TURKEY CHASE
Participants will bike through the night in Sherwood Park and raise money at the same time, starting at 10 p.m. on September 13. With their bikes decorated with lights, cyclists will collect donations for the Stollery Children’s Hospital Foundation. To register, contact organizers at bikethruthenite@gmail.com.
DATE: October 13, 2014 TIME: 8 a.m. to 1 p.m. LOCATION: Lions Park, Devon The Merriott Turkey Chase is being held with a goal in mind of keeping kids moving, while having fun! Visit merriottturkeychase.com for more information or to register.
EXTRA LIFE DATE: October 25 and 26, 2014 TIME: 8 a.m. to 8 a.m. Play Games. Heal Kids. This 24-hour gaming marathon raises funds through Children’s Miracle Network and benefits the Stollery Children’s Hospital Foundation. Register or donate at extra-life.org.
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BY Pat Fream
tech FILES
The Doctor is On Tuning in to telehealth is making real-time access to Stollery doctors possible for young patients in remote locales especially for those who live hundreds of kilometres away from the major centres that house specialists and sophisticated facilities. But there is a technical solution that puts patients in a room with distant health care professionals, minus the time, travel and hefty costs. It’s called telehealth – a technology-enabled health care system designed to provide remote patients with realtime access to medical staff in a separate location. Ava Daub was just three years old when she began having kidney problems. Recognizing that she required medical attention outside of the scope of the Peace River health system, the family’s general practitioner recommended Ava see a specialist in Edmonton. For the Daub family, their daughter’s health condition was distressing enough, but became even more so when considering that a visit to the doctor would now entail a 1,100-kilometre round-trip commute. “It was a very stressful situation for us,” says Jason Daub, Ava’s father. “We were basically looking at a fivehour car ride, which can be challenging with a small child. Then there is arranging care for our other three children, taking time off work, and the hundreds of dollars for gas, meals and hotels.” Luckily, the Daub family was spared a measure of heartache when they learned about telehealth. The remote care system, operated by Alberta Health Services, enabled them to meet face-to-face with pediatric urologist Dr. Peter Metcalfe via video teleconferencing at a site set up in their hometown. After travelling to the Stollery Children’s Hospital for an in-person consult with the doctor, and in between the two surgeries required to remedy their daughter’s condition, Jason and his wife, Michele, were able to meet with Dr. Metcalfe on three occasions without leaving Peace River. “It was tremendously reassuring and comforting when my wife and I could see and talk to the doctor in between our Edmonton visits,” Jason says. “We asked questions, discussed test results and felt incredible relief when the doctor took the time to explain exactly what we were dealing with.” According to Alberta Health Services, the province has more than 900 videoconference sites. Larger centres have clinical facilitators, and smaller rural communities have staff that assist patients with the equipment and ensure confidentiality throughout the session. Laurie Schick, a Stollery-based nurse and clinical S TO L L E RY K I D S. C O M
PHOTO: AMY SENECAL
HEALTH CONCERNS CAN BE ALARMING,
TECH SAVVY: Nurse and clinical telehealth facilitator Laurie Schick and pediatric urologist Dr. Peter Metcalfe are among hundreds of staff in 10 Alberta communities who enable remote patients to speak to medical staff in real time. telehealth facilitator, can’t say enough about telehealth benefits and efficiencies. “In one case we had five specialists in a single telehealth session,” Laurie says. “Imagine having one hour of five specialists’ time simultaneously – pretty amazing.” Dr. Metcalfe says telehealth is especially vital in northern Alberta, where the geographic territory for the Edmonton hospital is particularly vast. “I have patients from all over, including Red Deer, northern British Columbia, Grande Prairie, Fort McMurray and even some complicated cases from northern Saskatchewan,” says Dr. Metcalfe. “I see seven to 12 patients by telehealth each month and I think it’s an excellent option for some patients in those remote locations.” Dr. Metcalfe points out that, while telehealth is not a substitute for the more sensitive and critical visits doctors need to have with their patients, it is an effective solution for follow-ups and discussions about diagnostic tests and procedures. “I get all the referrals and decide which patients are suitable for telehealth,” he says, adding, “You can be sure every conversation ends with an invitation to come to Edmonton for an in-person visit – the door is always open.” S U M M E R 2 0 1 4 | HEROES
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THE
Family Way
FOR THE KIDS: Catherine and Rod MacKenzie say the Stollery is among their favourite causes to support.
For parents Rod and Catherine MacKenzie, giving back to children through events like the Haida Gwaii Totem Tour comes naturally BY Christy Nich
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HE 1,760-KILOMETRE CHARITY BIKE RIDE FROM
Haida Gwaii to Edmonton, meant more than 14 days of cycling, averaging 125 kilometres a day. It was daunting, but for Rod MacKenzie it proved to be both a personal challenge and another opportunity to fundraise for the Stollery Children’s Hospital Foundation. “I started talking to people in the riding community. I knew one or two of the riders so I thought I could get involved and participate,” says Rod. “The more I heard about it, the more I thought it would be appropriate. I cycle some, and at the same time it’s a fundraiser for the Stollery, so I decided to see how much of it I could do.” How much he could do ended up being about 1,000 kilometres. (Rod left the trip early to return to Edmonton for his son’s graduation.) But anything for the Stollery Children’s Hospital Foundation is worth the effort for Rod, including the aches and pains that come with pedalling 125 kilometres a day. 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
PHOTO COURTESY OF ROD AND CATHERINE MACKENZIE
volunteer HEROES
PHOTO: JAGS
neurological disorder which affects motor planning for speech, chewing, jaw movement among other things, depending upon the severity. Liam had surgery in Toronto, and today, at 16, he is a successful high school student who has managed to work around his speech and feeding syndrome. He’s going into Grade 12 next year, is on his school’s student council and is an honours student. Rod has been a board member of the Stollery Children’s Hospital Foundation for the last three years. Last spring, Rod stepped in at the last minute as emcee for a memorial donor appreciation event. “It was to honour family members and friends who either passed away within the Stollery or had directed memorial gifts to us,” says Mike House, president and CEO of the Stollery Children’s Hospital Foundation. “Rod was our emcee in a very emotionally charged and heartfelt celebration of life. With his own experience with Liam, he brought a sense of respect and humility that made everyone feel comfortable and welcome.”
The 2014 Haida Gwaii Totem Tour brought a custom-made totem pole to stand as a tribute to families who have lost a child.
TOTEM TRIBUTE: Artist Ben Davidson’s hand-crafted totem pole, funded through the Haida Gwaii ride, will stand in the lobby of the Stollery Children’s Hospital in memory of Stollery kids.
The Haida Gwaii ride brought a diverse group of fundraisers together, “from different walks of life, different backgrounds, from different areas and different age groups from 13- to 72-year-olds and every age between,” Rod says. “When you put them all together with a common task, at first everybody’s strangers, but they came together over several days.” Volunteering for the Stollery strikes a chord with both Rod and his wife Catherine. Their youngest of four children, Liam, was diagnosed with Bilateral Perisylvian Polymicrogyra syndrome. When he was just three months old his parents noticed he wasn’t feeding normally. The MacKenzies then took their son to specialists at the Toronto Sick Kids Hospital and UC Davis Children’s Hospital in Sacramento, California, where doctors ordered a CT scan. But University of Alberta geneticist Dr. Stephen Bamforth was the one who finally identified the problem. Under Dr. Bamforth’s supervision, Liam’s Alberta medical team ordered a special MRI, which led to them diagnosing a fairly rare S TO L L E RY K I D S. C O M
Rod’s wife of 23 years, Catherine, is also an active volunteer. For the Stollery, she donates her time in the Foundation office, has helped with the Corus Radiothon and last year’s CN Golf Tournament. But she is also active elsewhere in the community, helping with NorQuest College’s 1,000 Women, and she has been a canvasser for the Heart and Stroke Foundation. But Catherine says the Stollery is her favourite among the many causes she helps. “When you’ve worked for the Stollery, everybody is very generous,” she says. “I love fundraising for the Stollery. People love to share their stories. Once you’ve been there, it’s like a family. It’s very easy to be a part of, and I love being part of their events.” With Rod’s help, the 2014 Haida Gwaii Totem Tour raised funds to bring a custom-made totem pole – destined to stand in the lobby of the Stollery Children’s Hospital as a tribute to families who have lost a child – and to help support Aboriginal programs at the Stollery. The fundraising ride also brought awareness to the communities it travelled through: the same communities in Western and Northern Canada that use the Stollery. Among the images carved into the pole meant to bring inspiration to the families whose children face sometimes life-threatening illnesses are a mother bear and her cub. The butterflies on another part of the pole represent how children’s spirits are transformed through their life’s journey. In the meantime, Catherine and Rod’s daughter, Alex, has inherited her parents’ drive and is working at the Foundation as a summer student, between semesters at Queen’s University in Kingston, Ontario, where she is studying politics. The Stollery summer student program has Alex applying her fundraising skills, giving her the opportunity to represent the Stollery at community events. In addition to their son’s use of hospital’s services, Rod says he got involved with the Foundation because he now has time in his schedule to give back, and it’s a cause he couldn’t resist. He now joins professional colleagues and new friends in guiding the work of the Foundation. “A big group of us seem to gravitate towards helping kids,” Rod says. “It’s a great team.”
TOUR DE FORCE: Read more about the Haida Gwaii Totem Tour at: haidagwaiitotemtour.kintera.org S U M M E R 2 0 1 4 | HEROES
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alumni FILES
Coming
UP FOR AIR After 80 visits to surgical suites and countless hospital visits, eight-year-old Jessie Richards is breathing easier and living life to the fullest BY Jen Janzen
L
AST YEAR, ON CHRISTMAS EVE, EIGHT-YEAR-OLD JESSIE RICHARDS HAD
PHOTO: AARON PEDERSEN
a bath. Jessie’s mom, Roxie Malone-Richards, filled the tub right up to the top and watched with tears in her eyes as her daughter luxuriated in warm water up to her neck. Because of a tracheotomy performed when she was two-and-a-half years old, Jessie had spent the last five years carefully avoiding any contact with water. “Even a couple of drops in that trach could have drowned her,” Roxie explains. For a little girl who visited the operating room more than 80 times in seven-and-a-half years, and who had endured many months in the hospital, the bath was about more than personal hygiene: it was a celebration. “There were times I thought she was never going to come home,” Roxie says. “It’s been a nightmare to say the least.”
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INFECTIOUS ATTITUDE: Despite constant trips to hospital from an early age, Jessie Richards is known for her happy outlook on life.
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PHOTO COURTESY OF ROXIE MALONE-RICHARDS
TAKING THE PLUNGE: After years of avoiding contact with water due to a trach, Jessie Richards, seen here in the pool with mom Roxie, can take swimming lessons.
Jessie’s medical history began before she was born. At 23 was rapidly deteriorating. She had blood in her stool and a grey weeks pregnant, Roxie was put on bed rest at Edmonton’s Royal pallor to her skin. Alexandra Hospital because of abnormal bleeding. At 24 weeks, Fifteen minutes later, Jessie had gone into full cardiac arrest. It took her water broke. Roxie lay in bed and counted the hours, praying five minutes of chest compressions and two doses of epinephrine to to make it to 25 weeks, which was the minimum gestational age get her little heart beating again. The team looked at Jessie’s X-rays, that would give her baby any chance of survival. At 25 weeks and saw that she had intussusception of the large bowel (a condition three hours, Jessie was born. in which the bowel folds into itself), and asked Roxie’s permission “They cut the cord and scooped her away for evaluation,” Roxie for Jessie to undergo emergency bowel surgery. “I said, ‘She just had remembers. “And it was the longa cardiac arrest,’ and they said, est five minutes of my life.” Finally, ‘If we don’t do this surgery, she’s “There were times I thought she was a nurse put a “girl” band on her to die.’ ” never going to come home. It’s been a going hospital bracelet, and Roxie knew The surgery was a success. nightmare to say the least,” Jessie must have been OK. And the Except for an infection around the says Roxie Malone-Richards. little one-pound, seven-ounce baby incision, and the need for a temgirl did well at first, even breathing porary colostomy bag until the for the first few days. But at 10 days old she stopped breathing on her wound healed, Jessie seemed to be doing much better. At five-and-aown, and had to be intubated (fitted with a breathing tube). For two- half months old, Jessie had her breathing tubes removed and got to and-a-half months, Jessie was on a breathing tube and the Stollery’s go home for the first time. NICU team at the Royal Alex transferred mother and daughter to the Roxie knew to bring Jessie into the Stollery two years later when Stollery Children’s Hospital to figure out why Jessie couldn’t breathe Jessie again developed breathing issues. A bronchoscopy (a procedure on her own. in which a camera is inserted in the windpipe) revealed her airway Jessie stayed at the Stollery a few more weeks, with Roxie staying was the size of a premature newborn’s, because of the scar tissue that with her daughter every day in the morning until lunch, and coming had developed from so many intubations for such a long time. Reconback after supper. But on August 15, 2006 – which just happened struction of her airway was in order. to be Roxie’s original due date – something pulled her back to the “They were going to graft a piece of her rib into the hole in her airStollery right after lunch. way to give her a bigger airway,” Roxie explains. But it was a complex Roxie came back to the hospital to find that Jessie’s condition procedure, and Jessie needed to be put into a coma for eight days. 16
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When the time was up and all of the operations were finished, Jessie “Often, children become so unhappy with the medical procedures came out of her coma and, a few minutes after opening her eyes, that they run away. On several occasions I had to run after Jessie to coughed out a piece of the graft. “This put us right back to square catch up with her as she ran into the OR.” one,” Roxie says. Jessie also loved going to the Beach, a playroom at the Stollery that Nobody knew where the other piece of the graft was, so the Stollery features games and activities. “The Beach brought her through some team had to put Jessie under once more and take her to the operating very dark times,” Roxie says. Jessie had a tracheotomy for five years, room to find it. Luckily, it was stuck in the soft tissue of her throat and but that whole time, she had regular bronchoscopy appointments as not, as they’d feared, in her lungs. the Stollery team worked with the ear, nose and throat experts at the Following quickly on the heels of this nightmare was another one: Cincinnati Children’s Hospital to figure out a way to reconstruct her withdrawal. The drugs required to put Jessie in a medically-induced airway so she could lose the trach. coma were addictive, and the withdrawal period was severe. “She After multiple trips to and from Cincinnati and appointments at was picking at bugs; she thrashed the Stollery, Jessie finally had her around so much she had a bald tracheostomy tube removed. First, Since her throat healed, Jessie has spot on her head, you couldn’t her medical team had to restore her been able to do everything she missed throat to allow for its removal. Roxie reason with her. It was horrific,” out on while she had her trach: she Roxie says, her voice breaking as caught the removal on video, but she remembers. even without that digital record, she went skating and sledding in the When the withdrawal period would remember that day clearly. winter, she’s been taking swimming was finally over, Jessie’s throat It was August 15, Jessie’s original lessons and gymnastics classes. collapsed and she was once more due date, and the date of her cardiac rushed to the operating room. arrest episode seven years earlier. Roxie waited, growing more scared as the time crawled past. “It was “I consider that to be part of her birthday,” Roxie says. “She was reborn.” taking too long. I knew something was wrong,” she said. The medical When the pair got home, they celebrated Jessie’s freedom with a team said Jessie couldn’t be intubated anymore because of all the scar “trach-burning” party in the backyard. “Jessie got to throw the trach tissue – plus a piece was missing from where the graft had been – so in our fire pit,” Roxie recalls. “It was something she looked forward they had to perform an emergency tracheotomy. to for many years.” Last March, the Make-A-Wish Foundation of Northern Alberta grantTHROUGH ALL OF THESE CHALLENGES, JESSIE NEVER LOST ed Jessie’s wish to go to Walt Disney World, and they scheduled the trip her joyful attitude. She didn’t complain about needing to go to the to Florida for after the trach was removed. Jessie was in heaven. “Her hospital so many times and, often, when she was due for another feet never hit the ground the entire time she was there,” Roxie says. bronchoscopy, she would even run down the hall towards the OR, Since her throat healed, Jessie has been able to do everything she knowing that when she woke up, she would be able to watch The Lion missed out on while she had her trach: she went skating and sledding King, her favourite movie. in the winter, she’s been taking swimming lessons and gymnastics Dr. Trina Uwiera, a pediatric ear, nose and throat specialist (ENT) classes. And, since that first-ever soak in a full tub last December, at the Stollery, says that Jessie’s happiness was contagious. she’s been having lots of baths.
Sitting Pretty
PHOTO: AARON PEDERSEN
Six years ago, Roxie and Jessie started a fundraising program called Jessie’s Chair-ity. A motorcycle poker rally and scavenger hunt, it was originally started to raise money for special chairs for the Stollery’s Neonatal Intensive Care Unit at the Royal Alex so more parents can sit with their babies. For the last four years, the fundraiser focused on the Stollery Children’s Hospital Foundation, and donations have totalled $50,000. Roxie used to work at 630 CHED, and still gets to visit when the family helps with the station’s annual Stollery Radiothon. “How do you express your appreciation for saving your child’s life,” Roxie asks. “I used to listen to these stories from parents, never thinking I’d end up in their position. Nobody thinks they’re going to end up there. But aren’t you glad you have the Stollery? We are grateful for the Stollery every day.”
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On Sunday, June 8th, thousands of Canadians in 12 cities across the country joined together to celebrate the 11th Annual Walk for Miracles presented by Walmart.
www.walmartwalkformiracles.ca
THA NK YO U!
PHOTO: AMY SENECAL
Healing in
HARMONY BY Caitlin Crawshaw
At the Stollery Children’s Hospital, music brightens the lives of young patients S TO L L E RY K I D S. C O M
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W
ITH GUITAR IN HAND, ELIZABETH STOLTE
10 years or younger). With very young babies, she will hold the infant in her arms and sing a lullaby: “It’s pretty well-known that the human voice is very therapeutic for babies.” For other babies or children who are unable to move around, she might play her guitar and sing at their bedsides. If the goal is to provide intellectual stimulation, and the child is able to move, she might give the wee one a colourful, hand-held instrument to play with from her cart. Every patient’s needs are different, but Elizabeth’s philosophy is the same: “It’s my goal to involve the children as much as possible, whether that’s making choices about what we do or what we play,” she says. On some occasions, she’ll play recorded music on her iPad, as well. This has been the case with a 10-year-old patient who enjoys listening to the pop group, One Direction. This child has limited physical abilities, so playing instruments can be difficult. She is able to use an iPad so this allows her to “call the shots,” which is important for her emotional well-being. “When you’re living 24-7 in the hospital, you don’t have very much control,” says Elizabeth. “Music makes kids happy. It helps alleviate the stress of being in the hospital,” says Brianne Broughton, with the Stollery Children’s Hospital Foundation. A number of private donors make it possible to create and run a formal program, particularly the the energy company Devon Canada Corporation and Canadian music retailer Long & McQuade Musical Instruments. Both companies continue to provide financial gifts that
PHOTO: AMY SENECAL
quietly enters the room of an 11-year-old boy, who lies in bed, moaning. Before she begins to play, she asks his mother about the kind of music he likes and they decide on a song. As Elizabeth softly strums her guitar and sings (I can see clearly now, the rain is gone…), she watches the child to gauge his response. Halfway through the song, she notices a change: the boy has become still. His mother is astonished to see her son visibly more comfortable. “He completely settled! Unbelievable,” she says. This is all in a day’s work for Elizabeth, who creates small miracles for young patients and families at the Stollery Children’s Hospital. Since the program’s inception in 2011, within the Child Life program, the music therapist has used music to bring comfort to scores of children and youth who sometimes must undergo uncomfortable medical procedures in an unfamiliar environment. “Music therapists aren’t there to perform – we’re there to engage and involve people,” she says. “It’s not an entertainment service, it’s a therapeutic one.” First and foremost, Elizabeth’s job is to find the best way to use music to help a patient. She considers many factors, including the patient’s health, age, musical tastes and whether siblings or parents want to be involved, too. It’s all about adapting to the situation, says Elizabeth, who works with children from infancy to adolescence (although most patients are
GUITAR HERO: Elizabeth Stolte delivers her musical magic to tiny patient Janessa, to the delight of her parents Melissa and Andrew.
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PHOTO: AMY SENECAL
enable the hospital to hire Elizabeth three days per week and manage to calm someone down or distract them from their fear or discomfort.” the other costs associated with the program, including purchasing Of course, it’s not just sick kids who benefit from music. Parents musical instruments. are often relieved when their child receives a visit from the therapist. “Devon chose to support this program because our employees live When Elizabeth walks into a room, parents often sigh audibly. “You all over Western Canada and many of them have children,” explains can literally see the parents’ shoulders come down as they take a deep Nadine Barber, Devon Canada’s vice-president of government and breath,” she says. public affairs. “Each and every one of us has been affected either perEven in the most critical situation – when a child is dying, for insonally or secondarily with children’s health care.” Since 2012, Devon stance – Elizabeth says music can bring comfort. Her training allows her Canada has donated $50,000 to to use music to “provide a peaceful the music program (although it antidote” to the suffering of a pa“It’s my goal to involve the children has been donating to the hospital’s and their family. as much as possible,” Elizabeth Stolte tient general needs since 2010). Music has therapeutic benefits says. “Whether that’s making choices for virtually everyone – not just Long & McQuade Musical Inabout what we do or what we play.” struments has been raising funds emotionally, but physiologically. for children’s hospitals in Canada Research shows that music can slow since 2007 and in 2008, it added the Stollery Children’s Hospital to that a person’s heart and respiration rates, and that our brains are most enroster. Each year, during the months of November and December, em- gaged when we’re listening to music, Elizabeth explains. ployees at the company’s Edmonton locations sell $5 rental coupons It comes as no surprise, then, that children who participate in music for a $1 donation to the Stollery music therapy program. therapy while in hospital not only experience less anxiety, but may end “Everyone has had contact with a child who has had to go to the hos- up having shorter stays. pital – whether it’s their child or themselves as a child or a nephew or a “It’s hard to put your finger on what’s so magical about music. It niece,” says Sheri Katz, Long & McQuade’s national marketing and com- reaches us in this place inside,” she says. “Like food satisfies your hunger munity supports coordinator. “It’s a frightening thing and I think every- and water satisfies your thirst, music satisfies something less obvious, one who works at Long & McQuade can appreciate the power of music but just as important.”
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GUT INSTINCT: Dr. Eytan Wine and his team are studying intestinal bacteria to determine whether they are markers or causes of IBD.
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one TO WATCH
Under the
MICROSCOPE BY Lucy Haines
Dr. Eytan Wine is helping get to the bottom of inflammatory bowel disease markers in children
PHOTO: CHRISTY DEAN
T
HE INCIDENCE OF INFLAMMATORY BOWEL
diseases (IBD) in children has increased dramatically over the last 50 years and Dr. Eytan Wine wants to know why. For five years, the Israeli-born and trained pediatric gastroenterologist – who earned his PhD at the University of Toronto with further research and training at Toronto’s Hospital for Sick Children – has taken on the role of clinician and scientist at the Stollery Children’s Hospital in Edmonton, working “bench to bedside” to help kids with IBD. Spending up to 75 per cent of his time in the lab, Dr. Wine and his colleagues focus their studies on the bacteria in the gut, working to determine whether the organisms are a marker for IBD or a cause of it. Using different disease models, ranging from the petri dish and lab mice to a child’s own gut bacteria (with patient permission), lab doctors take samples during colonoscopy or endoscopy. A special microscope allows the researchers to look at live cells during endoscopy. “There is evidence to show that bacteria are different in people with IBD,” explains Dr. Wine. “So the question is: ‘Are the bacteria different because of IBD or do the different bacteria and inflammation cause the disease?’ ” IBD is an umbrella term for Crohn’s disease and ulcerative colitis, both of which are characterized by cycles of bacteria change and inflammation. While most treatments focus on reducing inflammation, Dr. Wine and his team test the theory of how food affects gut bacteria via nutritional therapy for children. For eight weeks, patients with Crohn’s disease are given specialized liquid formulas, offering a special balanced, healthy diet that is softer on the bowel than a normal diet. “There’s a lot of interest in probiotics and fecal transplantation – various treatments where changing the bacteria can help with IBD,” Dr. Wine explains. “The next steps in the lab are to identify which bacteria have the potential to cause harm, and which individuals have these bacteria. Then we can develop tools to see which patients will respond to these treatments.” With Drs. Hien Huynh and Matthew Carroll, Dr. Wine follows hundreds of children across Western Canada through the specialized, multidisciplinary IBD clinic at the Stollery. Kids often come to hospital with severe pain, sometimes also with diarrhea or blood in their stool. S TO L L E RY K I D S. C O M
While low weight, poor growth and anemia commonly go along with IBD, those in need of steroids also have to face the possibility of bone disease. “It can be a vicious cycle of inflammation and hospital visits, especially when first diagnosed. But it’s a chronic disease – our goal is to help children develop normally and live a normal life at home and school,” Dr. Wine adds. A disease primarily of the developed world and of young people – one-quarter of cases present symptoms in childhood, and many others in young adults in their 20s – IBD is usually more severe in children. Many causal factors for IBD have been flagged: genetics, environment and diet all are known to have an effect, and a hygiene hypothesis suggests that something in our modern lifestyle impacts IBD, as well as multiple sclerosis, diabetes and asthma. “With better hygiene over the years, there’s speculation that our immune system has become off-balance,” he says. Dr. Wine spends one day a week in the outpatient clinic as well as performing endoscopies, inpatient care and teaching. The rest of his time is dedicated to lab work, where national grants and funding from the Stollery Children’s Hospital Foundation, Alberta Innovates - Health Solutions, and the Women’s and Children’s Health Research Institute (WCHRI) enables Dr. Wine and fellow doctors to carry on critical lab work. “It wasn’t hard to convince me to move here, because I saw the clinical excellence and research opportunity,” Dr. Wine says. “I’m in a wonderful position, and I like what I’m doing. I want to keep research and clinical work at the centre of my productive activities.” Wine and his team are also part of a new national initiative funded by the Canadian Institutes of Health Research (CIHR) which is creating the country’s first national pediatric IBD network and data platform, bringing scientific researchers together like never before. “It’s a huge initiative – collecting information and samples from all new cases of children with IBD across the country,” Dr. Wine says. “We can potentially get a huge percentage of pediatric IBD patients involved, and therefore be better equipped to understand and treat the disease.” S U M M E R 2 0 1 4 | HEROES
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A Team
Effort BY Pat Fream
PHOTO: BB COLLECTIVE
It takes a tight network of professionals to coordinate more than 9,000 surgeries annually at the Stollery
DYNAMIC DUO: Shawn Hillhouse and Dr. Bryan Dicken are part of an elaborate team in the Stollery OR.
E
VER WONDER ABOUT THE ELABORATE SERIES
of steps involved in a planned trip to the operating room? Specifically, the people, equipment, services and schedules that must all line up perfectly to ensure the successful outcome of a surgery. “Teamwork is the key to working in our environment,” says Stollery Children’s Hospital pediatric general surgeon Dr. Bryan Dicken, underscoring the diverse network of collaborative care professionals who play a vital role in the process from initial referral to surgical recovery. Dr. Dicken’s patients range from extreme premature infants (at 23 weeks gestation) to 16-year-olds, and his specialty includes surgeries related to the head, neck, chest and abdomen. “Our operative team includes an anesthesiologist, OR nursing staff, a pediatric surgeon, and surgical residents,” he says. “Each member of our team is responsible for ensuring the delivery of expert care to create the best possible outcome for each and every patient.” Stressing the rigorous planning and cumulative teamwork that paves the way for each surgery, Shawn Hillhouse, patient care manager for operative services at the Stollery, highlights 25 distinct areas that commonly contribute prior to the surgeon taking up the scalpel. “The effective planning and impeccable teamwork begins in the surgeon’s office where the doctor, patient and family decide that a surgical procedure is the best course of action for a medical issue,” says Shawn. “Next, the surgeon and an office assistant submit the required forms to a wait-list registry, where a coordinator communicates with the surgeon to determine medical priorities and dates.” Shawn explains that at the Stollery there are more than 9,000
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operating room bookings per year, so fastidious planning and coordination is essential. Prior to surgery, many patients are asked to visit the preadmission clinic for a patient and family education session designed to establish expectations and inform them about processes surrounding the pre- and post-surgical experiences. The anesthesiologist and other medical professionals see the child and consult during this stage of the patient care plan, and in some instances tests and specimens are sent to the lab. Also at this point, the patient’s support systems are evaluated and potentially reinforced. “Social workers and Aboriginal Services might be engaged for extra support if it is deemed beneficial to the family – especially for those patients who are not from the Edmonton area,” says Shawn, adding that the Stollery surgical care unit has a reach extending to northern Alberta, northwestern B.C., Saskatchewan, Yukon, Northwest Territories and Nunavut. Once the booking coordinator has received the surgery date it is his or her job to line up the type of equipment and resources required for the operation. As technical tools and medical equipment are not necessarily on-hand and accessible at any given time, the week prior to surgery entails a methodical juggling act to locate and coordinate the necessary equipment and supplies. “The nursing team lead is a networking specialist, working diligently to ensure the equipment is available and booked for the precise time of the surgery,” Shawn says. “In some cases, when the surgery is specialized or uncommon, equipment may need to be borrowed and shipped from our health care partners throughout Canada or the United States.” 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
PHOTO: ROMY YOUNG PHOTOGRAPHY
On the day of surgery, a nurse admits and preps the patient. In the meantime, an appointed manager meets with several lead nurses to review patient flow charts (including discharges, admissions, and surgeries) and devise a collaborative map to precisely navigate the patient’s path to the operating room. Even as staff prepare to wheel the patient into surgery, it is still not the end of the complicated succession of pre-surgery activities designed to support the OR procedure. In the background, someone from the Medical Device Reprocessing Department has sterilized and assembled operative tools and service workers have set them up in the operating room; a pharmacy member prepares the required drugs; and the Blood Bank is securing the necessary blood products. The average surgery can take anywhere from one to six hours, depending on the problem and the complexity and, as noted by Dr. Dicken, there is a full team of multidisciplinary skills on hand. “Although we perform similar types of surgery on patients, each surgical procedure is tailored to meet the needs of each patient,” says Dr. Dicken. Some more complex surgeries take six to 16 hours. Post-surgery, the team continues to care for patients with additional support in pain services (as required), nutrition services, ward nursing staff, and child and health services are available for parent and child support. “It is the effective teams, highly skilled in their own fields, that enable us to deliver world-class care and provide outstanding outcomes across a broad spectrum of surgical diseases,” says Dr. Dicken. “This is what makes the Stollery such an incredible environment in which to practice medicine and care for the next generation.” S TO L L E RY K I D S. C O M
PHOTO: ROMY YOUNG PHOTOGRAPHY
BEHIND THE SCENES: Fastidious planning by office leads and nursing staff is behind every surgical procedure.
WORLD CLASS: The surgical team provides a complex set of skills in the operating room.
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MEET THE specialist
MAKING A
Difference BY Elizabeth Hames
Dr. Hien Huynh leads a multidisciplinary team specializing in gastroenterology and hepatology
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R. HIEN HUYNH STILL REMEMBERS THE MOMENT
go to school, find a job, get married – it is just so important,” he says. he decided to specialize in gastroenterology (GI) and Today, Dr. Huynh is doing just that in his role as the division hepatology. When the stakes are life and death, how could head for Pediatric GI at the Stollery Children’s Hospital in Edmonhe forget? ton, where he works as a doctor and researcher. He has partnered Dr. Huynh was training to be a pediatrician at Queen’s Medical with specialists around the world to develop ground-breaking Centre in the United Kingdom when a three-month-old baby who was research projects, including a study that examines the siblings of clinging to life was transferred to his unit. The child had a traumatic children with Crohn’s disease to better understand the genetic and event at birth that required surgeons to remove 60 per cent of his environmental triggers. bowel, and he had become jaundiced with liver disease along with his He has also promoted the establishment of a multi-disciplinary prematurity and inability to feed. team of doctors, nurses and dieticians who provide protocol-driven, To Dr. Huynh’s surprise, the doctors had not been pushing as much consistent care for children with these afflictions. This can include advoas possible to use the baby’s gastrointestinal tract for enteral feeding – cating for the family to get the appropriate resources for their care, plans the best way to restore the child’s and education that meet the needs health in Dr. Huynh’s opinion. of children and their families, and “To be able to help these kids to Instead, they were feeding him nutrition counselling, which allows achieve the quality of life that will intravenously. So Dr. Huynh the team to monitor patients and allow them to have a normal life – go tried pushing the enteral feeding, prescribe medications or advocate to school, find a job, get married – it is for surgery at the right time. “It’s a hoping to reverse the liver disease. After a week, the baby was still alive. powerful, systemic change that we just so important.” Another week went by, and then anmade,” says Dr. Huynh. other and the baby continued to survive. It was looking like Dr. Huynh’s Dr. Huynh points out that there are centres around the world that plan had worked. “I was very optimistic,” he says. have accessed the same treatments and similar medications, but their But despite all the efforts of Dr. Huynh and his team, the baby’s patients don’t do as well. Dr. Huynh says it’s because those centres don’t health took a turn for the worse. He died of liver disease about a month have the same multidisciplinary team of dedicated medical practitioners, after coming into Dr. Huynh’s care. “I was quite shaken by it all,” says nurses and dietitians providing the same level of support to patients and Dr. Huynh. “I thought we had a chance.” their families. “It’s more than just having the right medication,” he says. It wasn’t the first child Dr. Huynh lost to liver or gastrointestinal “It’s really having a dedicated team with the right treatment plan and the problems. But it was the tipping point that pushed him toward a spe- right protocol to follow these patients along. And we make a difference.” cialization in pediatric gastroenterology, a specialty that looks after He adds that if the baby he treated at Queen’s Medical Centre were children afflicted with liver and gastrointestinal diseases such as short to come into his multi-disciplinary clinic today, Dr. Huynh would have gut syndrome and Crohn’s disease. “To be able to help these kids to been able to intervene earlier and the child would have lived. “Without achieve the quality of life that will allow them to have a normal life – a doubt,” he says.
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PHOTO: AMY SENECAL
LIFE SAVER: Dr. Hien Huynh credits a team of dedicated medical practitioners, nurses and dietitians to better outcomes for children with GI issues.
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giving GUIDE
ILLUSTRATION: LINDA HENDRY
GIVING WITH
IMPACT Hiring a specialist is the best starting point when you are considering planned giving BY Mike Skrypnek
M
Y PREVIOUS ARTICLES IN THE PAST THREE ISSUES
of Heroes contained practical, common sense strategies to help you move planned giving forward in a way that is effective and impactful. Now I will give some more useful, simple tools you can implement. You may recall that I have recommended in the past the importance of hiring a specialist. That is because it will be critical to have an expert help you in implementing these tactics if they are right for you. You will need a specialist to dig deeper – whether that person’s an accountant, a financial advisor, insurance professional or an estate lawyer – or all of the above.
FIVE AMAZING WAYS YOU CAN GIVE FINANCIALLY: 1. Gift of cash: The easiest of gifts is to simply provide cash to the charity of your choice. This is direct and can be immediately used. In return, you will receive a tax credit for the gift. Opportunity for bigger impact: How about making a commitment in your personal budget and to the charity to provide a larger gift and spread it out over three to five years? It reflects your commitment and makes you a partner in the charity’s success while allowing for you to commit to larger gift. A twist: Why don’t you challenge your peers or the charity to use your gift as an opportunity for others to match it? That way one single gift has greater influence. 2. Gift of securities: Donating stocks or bonds have the same effect as cash. But if you are able to donate significantly appreciated securities in their security form, without selling first, you have been able to avoid paying taxes on the capital gains. The Canada Revenue Agency and 28
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Income Tax Act allow for individuals to earn a full tax credit for the donation of securities without tax on the capital gains. This is a great way to release “locked up” capital and use it for giving. Opportunity for bigger impact: When gifting highly appreciated securities, use this 50/50 Strategy™ for big impact in three simple steps: • Sell 50 per cent of stock for lifestyle income. • Gift 50 per cent of stock to charity. • Pay no capital gains taxes but gain charitable tax credit for entire gift amount. The result is that you pay no taxes on the disposition of this security, unlock trapped wealth and make a meaningful gift to charity. It is a win-win-win. A twist: You can take this further in just two more steps. This will enhance your gift, while adding a lifetime income amount you won’t outlive and preserving assets for your heirs in your estate: • Use the full cash value of the sold stock, plus the cash value of the tax credit earned and acquire an annuity. • Use that annuity to produce income for you for life, and a portion of that income to buy a life insurance policy – ideally for the total value of the securities you were dealing with at the beginning (this allows you to restore your estate to its full “pre-strategy” value). The results: • You pay no taxes on the disposition of the appreciated security. • You create a small annual amount of income you can’t outlive (from the annuity). • You make a significant gift to charity (50 per cent of the appreciated security). • You restore your estate to its entirety when you die through proceeds of the life insurance policy. 3. Gift of life insurance: The first step is to name your charity of choice as the beneficiary of your life insurance policy. When you die, the death benefit is paid out tax-free directly to the named beneficiary – the charity. Your estate will receive the tax credit for the charitable gift. Opportunity for bigger impact: Use this “Donation Multiplier™” to help you leverage surplus wealth into a much larger future gift. Step one is to use assets which you do not need to use to live on your surplus wealth - to purchase an annuity. That annuity income will fund the purchase of a life insurance policy. That annuity will fund the purchase of a life insurance policy. Essentially, you are now taking a specific amount of wealth and acquiring a tool that will provide incremental or even exponential value. In this case, we suggest making the charity the named beneficiary of the insurance policy, which will direct the payment of the death benefit to your chosen charity. This will provide your family with a much more significant legacy gift, and in turn, provide a major tax credit which will ensure more of your estate stays in the hands of your heirs and is not paid in taxes. 4. Gift of RRSP or RRIF: As the sole surviving spouse, you can designate a charity as the beneficiary of your RRSP or RRIF. Opportunity for bigger impact: Try doing a “60-Second Bequest™” – request a “change of multiple beneficiaries” form from your plan S TO L L E RY K I D S. C O M
administrator to add a charity, along with your heirs, as a beneficiary of your registered plan. In a very simple and convenient way, this preserves inheritance for heirs, adds a gift to a charity (for no cost) and provides a tax credit for your estate to be used by your executor when filing your final tax return. 5. Establish your own private foundation with a Donor Advised Fund: Donor Advised Funds (DAFs) act as an individual’s, or family’s, own private foundation – without the administration, management of assets or filing requirements. Donors make annual decisions on charitable giving, while adding ongoing ability for tax planning (both for current income as well as in their estate). A DAF provides contributors with flexibility, with most set up on an endowment model with a minimum and maximum annual disbursement. Some, however, such as the Benefaction Foundation will allow donors to disburse all their funds to charity within a very short period. Other organizations offer DAFs as well, including community foundations, major banks, or independent financial services companies. Donors must understand the foundation acts as administrator of the investment funds and works closely with banks and other financial providers to manage the assets. As expected, there are costs and fees; it is important to learn just what proportion of your expected returns will be consumed by fees and what type of investment returns would be needed to generate your minimum disbursement amounts annually. Opportunity for bigger impact: This structure separates your tax planning and charitable donations. As you are already charitably inclined, you are able to make a tax-driven decision in a calendar year, and then take the time to consider where to direct your charitable gift. This will prevent you from making a gift that falls under a calendar date deadline only to realize the charity you gave to wasn’t really the one you would have donated to if you had more time. The DAF acts as your own private charitable foundation. A lasting legacy: DAFs, as with any family foundation, create an opportunity to share the philanthropic message of legacy with family members. The annual decision-making around directing grants can be a rallying point for families who are encouraged to discuss their own ideas for giving. In the sense of legacy, an estate that attributes a donation to an established DAF is also providing an opportunity for the heirs to come together in managing the gifts for that DAF annually. It is a chance to reflect on what late family members stood for, while promoting stewardship and a sense of social involvement for heirs who remain. It is important for us to review why we are giving. When discussing philanthropy, I have said that simply loving mankind isn’t the essence of it. It is about the doing. Start today to move your big-impact giving forward.
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 fourth of a four-part series. Contact Mike at Mike.Skrypnek@RichardsonGMP.com. S U M M E R 2 0 1 4 | HEROES
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TRAIL BLAZERS: Bob and Shirley Stollery spent countless hours fundraising, despite a busy family and work life.
Community
BUILDERS BY Brynna Leslie
Now in its 20th year, the legacy of Bob and Shirley Stollery lives on through the Stollery Charitable Foundation
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PHOTO COURTESY OF STOLLERY CHARITABLE FOUNDATION
Children’s Hospital in 2001 and the Stollery Children’s Hospital Foundation, Bob and Shirley Stollery were committed to giving back to the City of Edmonton. This year marks the 20th anniversary of the Stollery Charitable Foundation, a private, family-run charity, a long-time funder of the hospital and its foundation, and what has grown into one of Edmonton’s four largest charitable organizations. “My grandparents both came from humble beginnings,” says the Stollerys’ grandson, Jeff Bryson, who became the first full-time executive director of the Stollery Charitable Foundation 18 months ago. Bob Stollery’s parents settled in Edmonton when they first emigrated from Europe and became pioneers in Strathcona, where they camped in a tent for an entire year. Bob was born in the city, and was raised in a one-bedroom house where he slept in the attic with five of his siblings. In 1942, Bob joined the Royal Canadian Navy and worked on a initial fundraising injection of $10 million to help open the facility in destroyer protecting convoys traversing the North Atlantic. During the the early 2000s. course of his basic training, he met Shirley Hopper in Toronto. They In 2004, the Stollery Charitable Foundation awarded $500,000 to married in 1948 and Shirley supported the family while Bob attended develop a pediatric unit within Alberta’s new heart facility, the Mazanthe University of Alberta. Following graduation from the faculty of kowski Heart institute. In 2010, it directed $250,000 to the expansion of engineering in 1949, Bob started as an engineer-in-training with Poole the emergency room in the Stollery. Most recently, the family’s foundaConstruction (now known as PCL Construction). By the late 1960s, he tion awarded the hospital half-a-million dollars for the renovation and had risen to the position of president of the company and in the mid- expansion of intensive care units. 1970s, he led an employee buyout of the company and became the chief “When a child is critically ill, the entire family is disrupted,” says Mike executive officer. House, president and CEO of the Stollery Children’s Hospital Founda“Through good luck and hard work, my grandfather proved to be tion. “Our ICU units were built in the ’80s when the wisdom was ‘Jam a pioneer himself. He became very successful. But he never took it for as many as you can in there, and draw a curtain for privacy.’ But famgranted,” Jeff says. “He realized ilies have changed; you have entire that not everybody gets the equal families in the ICU, devastated par“Bob and Shirley Stollery were opportunity to achieve that success, ents and grandparents. You cannot dynamic, inspirational and whether it be for health reasons or separate them by a curtain. It’s not philanthropic, but they were more other circumstances.” respectful and it’s not private.” than that,” says Mike House. Throughout his career, Bob travBeyond funding the hospital and elled extensively. Shirley was at its foundation, the Stollery Charit“They were community builders.” home with their three children. able Foundation casts a very broad Despite their busy lives, the two spent countless hours fundraising for net. It has funded projects across Edmonton and Kamloops that conprojects close to their hearts. Specifically, they wanted to fund projects tinue to reflect the diverse vision of its founders. “We have a lot of flexdirectly where money was imminently needed. ibility in terms of the types of projects we can fund,” says Jeff. “Many “They had a keen eye for determining service needs or lack of services grants brought forward come from meeting with charities face-to-face or in the community,” says Jeff. “They were always interested in talking to having contact by phone or email with individuals or charities.” people to find out how and where they could grant money to build a As the foundation has grown, it has maintained the grassroots feel stronger community.” of the organization, Jeff says.“It’s a delicate balance of trying to mainAfter years as anti-poverty and children’s health advocates, in 1989, tain the history and the tradition of the foundation and the founders’ the Stollerys played a key role in launching the Edmonton Community vision, while at the same time moving forward and innovating to make Foundation by injecting $5 million to support granting programs. Bob the funds more accessible to continue to offer meaningful grants in the became the foundation’s first president. community,” he notes. In 1994, inspired by the success of the Edmonton Community FounThe Stollery Charitable Foundation is the legacy of Bob and Shirley dation, Bob and Shirley launched the Stollery Charitable Foundation. Stollery, who not only altered the face of a city but who also inspired its Health, education, social services, poverty alleviation and human citizens to be altruistic. “Bob and Shirley Stollery were dynamic, inspirrights were at the core of their vision. “It was a means of formalizing ational and philanthropic, but they were more than that,” says Mike. the family’s philanthropic work to provide structure and to allow the “Their generosity was ubiquitous. They were community builders.” community to benefit from contributions in perpetuity,” Jeff explains. “You can be generous and inclusive, but someone has to step up to From the outset, the couple engaged their family as members of the be the leader and show the way and that’s what the Stollerys did,” he foundation. Although Bob and Shirley have both died, Bob in 2007 and adds. “And with the Stollery Charitable Foundation, that’s what Bob and Shirley in 2011, the Stollery Charitable Foundation continues to be run Shirley Stollery’s children and grandchildren continue to do.” privately by their adult children and their spouses. Despite its independence from the Stollery Children’s Hospital FounFUND FACTS: The Stollery Charitable Foundation dation, the two organizations maintain a close relationship of support. gives grants for a wide range of initiatives. The Stollery Charitable Foundation has granted $1.75 million to the Details are at stollerycharitablefoundation.org children’s hospital and its foundation, over and above Bob and Shirley’s
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PHOTO COURTESY OF STOLLERY CHARITABLE FOUNDATION
L
ONG BEFORE THE ESTABLISHMENT OF THE STOLLERY
corporate HEROES
Building Blocks
of Hope BY Cory Schachtel
GRIN AND BEAR IT: The Bear 100.3 personality Ryan Maier joins Karen Faulkner from the Stollery Children’s Hospital Foundation, Pat Lavin from WorleyParsonsCord, and fellow Bear personalities Gillian Foote and Paul Brown with a donation for the Stollery Children’s Hospital Foundation.
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PHOTO: NICKI WOHLAND
WorleyParsonsCord workers use their skills and generous spirit to help kids in need
PHOTO: NICKI WOHLAND
STRIKING A CORD: Mike House of the Stollery Children’s Hospital Foundation joins Wil Fraser and Dustin Nielson (right) of TSN1260 as Pat Lavin of WorleyParsonsCord and Stollery kid Jack Pinchuk present the cash the company donated during Stollery Week 2014.
M
ODULE ASSEMBLY YARDS – MOD YARDS, FOR
It’s those same skilled hands, the ones that piece together a giantshort – are where highly-trained adults act like children, sized Lego set, that Pat says deserve all the credit for making a differtaking raw components of steel and piping and piecing ence in the lives of the province’s sickest children. “This is entirely a them together like Lego blocks, with one major differ- mod yard initiative that has the full support of the WorleyParsons ence. “One of our Lego blocks is 120 feet long, 24 feet wide, 24 feet group,” he says. “This is time and money out of the pockets of the high, and weighs up to 350,000 pounds,” says Pat Lavin, the director tradesmen and -women who come to work every day, and it’s the of modules and fabrication for WorleyParsonsCord, overseeing 550 quality of those people that make this successful.” people at the company’s two Edmonton mod yards, where they conAs the relationship with the Foundation grows, they’re finding struct and send entire facilities all over Alberta, piece by piece. that monetary donations alone don’t fill their desire to help. The So when Pat and his coworkers were looking for their charity of company recently built a shack for Sunshine Village to house choice to continually support, they fittingly thought of kids. “Our mod handicap ski equipment for disabled skiers and snowboarders, yard business started in ’05. By and are in talks to do something 2007, we were in a position where similar for the Stollery. “We’ve got “The Stollery is a fantastic facility, we could add fundraising into the right in our backyard. We believe that construction expertise and we’ve business,” says Pat. “We had two engineering expertise, and as tradesmen and -women in Alberta got basic parameters: we wanted it to our tradespeople are excited to we’re in a position where we can give build something different,” says be child-focused, and Edmontonback, and our workers generously based. We very quickly decided on Pat. “I’ve spoken with Mike about the Stollery Children’s Hospital.” building them a float for a parade. do so, over and over.” Since then, the mod yard trades So we are going to volunteer our people have added a fundraising component to every staff barbecue, time and share some of our expertise. Again, that will lean on the golf tournament, team-building event and Christmas party. It started skills of our tradespeople.” small but built momentum each year, until skyrocketing to $10,000 While he shows the leadership quality of deflecting all praise – and in 2012. Funds raised total more than $64,000 for the Stollery to date. would likely take all the blame were there any to go around – Pat Lori Finck is the Stollery Children’s Hospital Foundation’s develop- exemplifies the work-hard-and-give-back attitude that is ubiquitous ment officer, a job that includes reaching out to donors. She says the throughout the mod yard ranks. “The Stollery is a fantastic facility, biggest reason the mod yard fundraisers are so successful is that the right in our backyard. We believe that as tradesmen and -women in hospital touches the lives of so many employees. Alberta we’re in a position where we can give back, and our workers “We were excited when Mike House, our president and CEO, was generously do so, over and over,” he says. “We’ve never had an initiagiven the opportunity to present to more than 500 WorleyParsons- tive that’s failed, and that’s all because of the quality people we have Cord employees in April,” Lori says. “During his visit, he demonstrat- working for us everyday.” ed how many of them were touched by the Stollery. By a simple raise BE A CORPORATE HERO: Are you part of a of hands indicating those who knew someone that used the Stollery, company that wants to give back? almost all their hands went up. It was a great visual to show how Visit stollerykids.com to find out how. many lives the Stollery touches. You never know when the Stollery will be important to your family.”
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WHY I donate
A SLICE OF
Life
Nitza’s Pizza owner pays tribute to his niece by giving back with discounts and a genuine pie-making experience BY Sue LeBreton
P
ETER GIANNAKOPOULOS, OWNER OF THE ORIGINAL
Even 20 years after her death, Peter says Nitza is not gone. “I feel like Nitza’s Pizza on Wye Road in Sherwood Park, has been mak- she’s guiding me. There’s not a day that goes by that I don’t think ing pizzas for four decades, and making sick children smile about her. I talk about her all the time.” But that comfort with talkfor at least half that long. His dedication to bringing smiles ing about her did not come quickly or easily. Peter says he found it to the faces of children, sick or well, began when his niece Nitza was difficult to talk about his beloved niece for a long time. It was two diagnosed with a brain tumour at age 10. Heartbroken to learn her years after Nitza died before he was able to answer the phone and say, time with the family was lim“Nitza’s Pizza.” ited, Peter spent as much time Peter has since opened up “When you walk into his restaurant, as possible with Nitza. She his restaurant to all Stollery you feel like you’ve walked into a family looked forward to visiting him families. They are welcome to kitchen. That’s why he fits so well at the restaurant, which was visit and enjoy a break with named A1 Pizza at the time. “I family and friends, savour the into the community,” says Lori Finck, was in the clouds. I could not delicious pizza and even have development officer at the Stollery believe that she was going to a chance to tour the kitchen Children’s Hospital Foundation. “And the go and there was nothing we and make their own pie. “It’s community loves him to pieces.” could do about it,” Peter says. so close to my heart, there’s Like the loving uncle he was, nothing I won’t do for that he could not resist spoiling Nitza by buying her treats at the nearby gro- hospital,” Peter says. “I love hearing the families’ stories and talking cery. “Every day she’d spend more and more money, but the candy was to them. If I can put some joy in their faces even for five minutes it not for her,” Peter explains. “She would pass them out to the nurses, the is worth it.” Given his personal experience, Peter says he feels comdoctors and the other kids at the hospital.” He recalls sitting at a table fortable talking to families about their sadness and pain. “I am also with his niece and teasing her that she would soon need to earn her happy to simply listen to them. People should never underestimate own money to pay for all the candy. “She said ‘change the name of your the power of just being there.” place, name it after me and give me the royalties.’ ” In the early days, after Nitza’s Pizza was christened, Peter gave out Within a day of her request, Peter changed the name of his restaurant coupons for free pizza and a drink to local schools and at sporting to Nitza’s Pizza. When he asked Nitza what he should do with the roy- events, suggesting they make a donation to the Stollery in return. This alties, she replied, “Uncle, make other kids happy like you make me.” past fall, he began requesting a $1 donation and has raised over $7,700
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PHOTOS: NICKI WOHLAND
SERVING THE STOLLERY: Nicki Wohland of the Stollery Children’s Hospital Foundation (left) and Braden Mole, former Stollery kid, join Nitza’s Katlyn Ellis and Peter Giannakopolus (right) to receive his donation of $4,100, just one generous instalment of many by the Nitza’s Pizza owner.
SAY CHEESE: Stollery alumnus Braden Mole gets a taste of the pizza-making experience that Nitza’s Pizza has given to many Stollery kids and their families. in just seven months. Another source for donations is the 10 to 15 per cent of every large corporate pizza order that Peter directs to the Stollery. His methods of raising money are as creative and diverse as his pizza toppings. For a period of time he owned a racehorse, aptly named Nitza’s Pizza. Every time the horse won, Peter would donate $1,000 to the Stollery. He also offers free birthday parties at his restaurant, with the caveat that each attendee gives $5 to the Stollery donation box that sits on his counter. This summer he is planning the first annual Nitza’s Pizza Picnic, during which he will host families at a race track, where he plans to entertain and feed them, donating all the funds raised to the Stollery Children’s Hospital Foundation. S TO L L E RY K I D S. C O M
Peter says he enjoys finding innovative ways to generate donations. “I’m open to new ideas. I know I can do a lot of things. If I put a smile on any kid’s face, sick or not, it makes me happy.” And his contributions are appreciated by the many he affects. “Peter’s gift comes from his heart,” says Lori Finck, development officer at the Stollery Children’s Hospital Foundation. “When you walk into his restaurant, you feel like you’ve walked into a family kitchen. That’s why he fits so well into the community and the community loves him to pieces.” It’s a love affair that’s mutual. Peter says he could not accomplish what he has without the ongoing support of Sherwood Park residents. “I have the best customers in the world,” he says. S U M M E R 2 0 1 4 | HEROES
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Who thinks you’re a superhero? We do. To all our customers, team members and supporters, thank you for helping us raise over $835,000 for Alberta’s two children’s hospital foundations. You’ve helped give hope to sick and injured children across Alberta.
Proceeds support:
™ Trademarks of Alberta Treasury Branches.
BY Lucy Haines
HOSPITAL portrait
Children’s Crusader Dr. Susan Gilmour masters the role of juggler, succeeding as U of A Chair of Pediatrics, AHS Child Health Leader and mother roots and work ethic serve Dr. Susan Gilmour well in her multi-faceted role as University of Alberta Chair, Department of Pediatrics, and Alberta Health Services (AHS) Edmonton Zone Clinical Department Chair for Child Health. Juggling a clinical practice with ongoing research into the outcomes for children after liver transplant, all while leading nearly 150 staff in the U of A pediatrics department is often all in a day’s work for this energetic pediatric gastroenterologist – though she admits she’d like 48 hours in that day to get everything done. Describing herself as driven to make children’s lives better, it’s easy to see what fuels Dr. Gilmour’s fire. “My big passion is the functional outcomes for children and their families after liver transplantation,” says Dr. Gilmour. “We can do fantastic things medically, but how are the kids doing at home and school? I like to think we give families back a normal child. Are we doing that? If not, why?” Dr. Gilmour and her team at the Stollery Children’s Hospital provide pre- and post-operative care for all the pediatric liver transplants in Western Canada – about 12 to 15 each year – and are one of just three such hospitals in Canada. The team is particularly interested in other, less obvious behavioural outcomes in children after liver transplants, like assessing math skills and non-verbal learning. Via questionnaires, neuropsychological testing and partnership with colleagues at the Glenrose Rehabilitation Hospital, Dr. Gilmour and her fellow researchers hope to better address school and functional outcomes for transplant recipients. “Our program is 25 years old, but it’s becoming a powerhouse thanks in part to the Stollery Children’s Hospital Foundation, which supports our academic mission and allows us to do leading-edge research,” says Dr. Gilmour, also pointing to the North America-wide SPLIT (Study on Pediatric Liver Transplantation), where she sits on the growth and development subcommittee. “Children are about 25 per cent of the population, using 11 per cent of health-care dollars. It’s challenging in our current economic environment, but I’m determined to keep that percentage in the forefront,” she says. “I have to advocate for child health to make things better for patients and their families.” Babies under two years of age account for more than half of all transplant patients, and Dr. Gilmour’s research considers why patient outcomes are better when bodies and brains are well-nourished. As a result, the hospital provides nutritional supplements to babies before the transplants. Gilmour’s passion for child health sees her travel for S TO L L E RY K I D S. C O M
PHOTO: KEVIN TUONG
HER PRACTICAL, “GET IT DONE” SASKATCHEWAN
MULTI-TASKER: Dr. Susan Gilmour has a full plate with three children, a clinical practice and a role of chair of the department of pediatrics, but that doesn’t stop her from advocating for children undergoing liver transplants. conferences and committee work, but she still puts in her share of on-call weekends (one in six weekends). And she’s also a mom to three school-aged children, who are now 10, 14 and 17. “I try to balance as best I can, but I still leave for work too early and get home too late,” adds Dr. Gilmour. “Even though there’s work to do after the kids go to bed, and on weekends, my oldest once said ‘I’ve never felt “My big passion is the functional like my mom wasn’t there.’ outcomes for children and their That was nice to hear.” Moving to the U of A in families after liver transplantation.” 1997, after medical school training in Saskatchewan and time at Toronto’s Hospital for Sick Children, where she completed a research fellowship in pediatric hepatology, Dr. Gilmour says it’s the opportunities and people that have kept her here for 17 years. “It’s a fantastic place to work as an academic physician, studying children’s liver disease with phenomenal colleagues,” she adds. “It’s probably my roots, where I want to be able to speak and lead from a place of knowledge, so I could never lose touch with the clinical side. It’s why we’re here, and I know I have to walk the walk to talk the talk. I want to make outcomes better for these kids.” S U M M E R 2 0 1 4 | HEROES
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THE LAST word
Diary of a Play Lady A child life specialist reflects on nearly four decades of serving children BY Dianne Tuterra
IT IS AMAZING TO THINK THAT ON SEPTEMBER 7, 1976, I walked through the doors of the old University Hospital to begin my career as a “play lady.” Yes, that was the official title for what is now known as a child life specialist. That position began a wonderful 38-year career of working with children and their families. Most people can only hope to work each day at something that both challenges them and gives them great joy. I feel very fortunate to have found a career that I have truly loved. I have had many memorable mentors over the years and I have worked with many dedicated and fascinating people – but those who have most touched and changed my life have been the children. Children have been my greatest teachers and my greatest inspiration. I marvel at the resilience of children and their ability to cope in a world that can be difficult for most adults to navigate. For children, each day is a new day to discover and explore, no matter how the day before treated them. They wake eager to begin their day, eager to take on the tasks ahead and are full of hope. Children are quick to forgive old hurts and make new friends. They face the challenges of each new day with excitement and curiosity. They can truly be in the moment, and they find joy in what lies under the rock or in the rain as it makes a new puddle to jump in. It is with this learning that I move into this new phase of my life – retirement – a little smarter perhaps, but certainly with a new consciousness of what is really important and how I might make a difference. I hope that when I take the hand of one of my grandchildren, I will impart some of the wisdom I have learned from the multitude of small spirits who have guided my work and my life. Thank you to all the children, families and people I have had the good fortune to know on my career journey.
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