Heroes Winter 2017

STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION • WINTER 2017

With the help of his mom and the Stollery, Jacob Martens’s bright personality is front and centre

REACHING OUT Ashley Radomski’s research aims to help teens deal with anxiety via the Internet

MAKING THE SHIFT When kids need to transition into adult care, Karen Johnston is there to make sure things go smoothly

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PLUS:

FINDING THEIR WAY New app guides Stollery brain surgery patients and their families through the process

A GIFT IN HIS WILL HELPS ONE MAN’S LEGACY LIVE ON AT THE STOLLERY

THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC AUTO GROUP

Presented by

With your generous support, our 18th Annual Corus Radiothon raised more than

$1.3 Million

*

for the critical care expansion at the Stollery Children’s Hospital.

Thank you!

*gross fundraising total

Special thanks to our 2017 Corus Radiothon sponsors and partners!

Proudly supporting Photo credit: Chris Stambaugh, Lisa Mulleler, Paula Gerein, Trevor Boller, Riyaz Sharan

contents WINTER 2017

Departments

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

Stollery Family

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18 REMOTE ACCESS Even before they arrive, the pediatric critical care transport team is helping medical staff in rural areas

The Rifton Pacer Walker helps kids at the Stollery get back on their feet

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Researcher Ashley Radomski has many burning questions to answer about teens and mental health

28 SHIFTING EXPECTATIONS

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24 MILESTONE Costco’s Miracle Month of May campaign does as much for employee morale as it does for children’s hospitals like the Stollery

27 VOLUNTEER HERO

Karen Johnston helps teens with different illnesses make the sometimes-tricky transition into adult care

The Stollery is a cause near and dear to the heart of the 2016 Mighty Millions Lottery grand prize winner

FOUNDATIONS OF LIFE

15 TECH FILES

22 CASTING A NET

35 WIN-WIN SITUATION

A NETWORK OF CARING

Cody Lakevold is revved up about Wheels for Wellness, a new fundraiser for the Stollery Children’s Hospital Foundation

Features

32 CORPORATE HERO

10 TRUE COLOURS Grande Prairie’s Jacob Martens doesn’t let complications from premature birth get in the way of his big personality

16 FAMILY BONDS After receiving a kidney transplant from his dad, 18-year-old Jax Dorward is cherishing the time he gets to spend with his family

30 LIVING AND GIVING

Building Trades of Alberta puts new Neurosurgery Kids Fund app on a solid foundation

36 WHY I DONATE A gift in his will helps Orest Kotyshyn’s legacy live on

38 THE LAST WORD

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Giving back to the Stollery became a family affair for the Browns after one of their sons needed surgery as a baby

18 ON THE COVER: Eight-year-old Jacob Martens and his mother, Ali. PHOTO: Darryl Propp STOLLERYKIDS.COM

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Annual Report2.pdf 1 12/19/2016 2:24:38 PM

WINTER 2017 VOL 5 • No. 1 Stollery Children’s Hospital Foundation ASSOCIATE EDITOR: ALEESHA BRUNO-JEX PRESIDENT & CEO: MIKE HOUSE, MBA Stollery Children’s Hospital Foundation

DONATE TODAY

at stollerykids.com or text STOLLERY to 45678 to donate Your generosity funds specialized equipment and facilities, programs, training and research to give the sickest kids the best chance to live a long and healthy life. Thank you!

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BOARD OF TRUSTEES: CHAIR: RICHARD KIRBY, LLB, MBA, FELESKY FLYNN LLP VICE-CHAIR: LINDSAY DODD, B.Comm., MBA, CompuVision Systems PAST CHAIR: T. MARSHALL SADD, Lloyd Sadd Insurance Brokers LAURIE ANDERSON, CPA, CMA, One Properties RICHARD BALAN, RTA Holdings Ltd. KELLY BLACKETT, Canadian Western Bank JEFF BRYSON, The Stollery Charitable Foundation JONATHAN CHIA, Maclab Properties Group JACQUELYN COLVILLE, CA, CPA, ICD.D., Champion Petfoods DR. ALF CONRADI, Stollery Children’s Hospital DAVID G. FILIPCHUK, P.Eng., PCL Constructors Inc. NOAH JONES, BA, CFP, CLU, Fairley Erker Advisory Group ROD MACKENZIE, P.Eng., Legato Resources Ltd. STEPHEN PETASKY, The LUXUS Group RYAN POMEROY, Pomeroy Lodging LP IAN W. REYNOLDS, QC, ICD.D., Bennett Jones LLP CORY D. WOSNACK, Avison Young DR. GREG ZESCHUK, Blind Enthusiasm Group EX OFFICIO: DR. RICHARD FEDORAK, University of Alberta DR. SUSAN GILMOUR, University of Alberta and Stollery Children’s Hospital DR. CHRISTINE KYRIAKIDES, Stollery Children’s Hospital DR. DAVID MADOR, Alberta Health Services CHRISTINE WESTERLUND, Stollery Children’s Hospital

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VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY EDITOR: GLENN COOK ART DIRECTOR: CHARLES BURKE DESIGNER: ANDREW WEDMAN PRODUCTION MANAGER: BETTY FENIAK PRODUCTION TECHNICIAN: SERENA STRAND DISTRIBUTION: KAREN REILLY

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CONTRIBUTING WRITERS: Koren Cromwell, Steve Macleod, Anglia Redding, Josie Starosta

YOUR DONOR DOLLARS IN ACTION

Together, we gave $11.1 million to the Hospital last year Research $5.1M

Training $1.3M

CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Bluefish Studios, Darryl Propp, Riyaz Sharan, Eugene Uhuad, Nicki Wohland ABOUT THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION The Stollery Children’s Hospital Foundation funds excellence at the Stollery Children’s Hospital. Excellence comes in many forms: specialized equipment; sub-specialty education to train the brightest medical minds; research to discover new treatments and cures; and specialized pediatric programs that improve family- centred care, and patient and family outcomes.

Content may not be reprinted or reproduced without permission from the Stollery Children’s Hospital Foundation.

HEROES is published for the Stollery Children’s Hospital Foundation by Venture Publishing Inc., #300, 10339 - 124 Street, Edmonton, AB T5N 3W1 Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276 circulation@venturepublishing.ca Printed in Canada by Burke Group of Companies Limited.

Heroes is printed on Forest Stewardship Council® certified paper Publications Agreement # 40012957

Equipment and Facilities $3.4M

Programs $1.3M stollerykids.com | #StolleryKids

Return undeliverable Canadian Addresses to: Stollery Children’s Hospital Foundation 1502 College Plaza, 8215 - 112 Street, Edmonton, AB T6G 2C8 All fundraising totals are listed as gross unless otherwise specified.

For more information on fundraising targets and expenses, please contact the Foundation at 780-433-5437.

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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FOUNDATION message

A Network of Caring

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

together. People making meaningful connections.

These are all definitions of the word “network,” which – as a stand-alone word – may not mean much, but when you see it in action, it can have a remarkable impact. Here at the Stollery Children’s Hospital Foundation, we’re fortunate to see the impact networks can have every day.

Whether it’s our Stollery Women’s Network, which has grown to 532 members actively fundraising and raising awareness of the amazing work that happens at the Hospital, or our Stollery Youth Network, which has caring tweens and teens working together to plan the first youth philanthropy conference in Edmonton, a group of individuals uniting for a common cause is the very idea behind philanthropy.

A cornerstone of our vision is to create a network of care to provide kids and their families with greater access to the Stollery standard of care where they live. Research shows that kids who are sick recover better when they’re closer to home and their loved ones. The exceptional standard of care that currently exists at the Hospital is radiating to more outlying areas due to an increasing child population in our province, as well as emerging needs from both remote and indigenous communities.

With the help of a growing number of community supporters who believe the time is right to advocate for a dedicated Stollery tower to better serve patients and families, this Stollery network of care will include community outreach support, education programs and a standard of care delivery for other health institutions to build upon.

One example of how this network of care is already being applied in rural communities is in Grande Prairie. As the city of more than 58,000 residents prepares to open its new hospital in 2019, there are plans to include additional space for obstetrics, including a new operating room specifically for cesarean section deliveries. Projecting 2,100 annual births in the region by 2025, there is a high probability some of those children will rely on the pediatric expertise only the Stollery can provide both in terms of education and treatment.

Currently, the Stollery’s pediatric transport team travels to referral centres in Grande Prairie, Fort McMurray, Fort Vermilion, High Level and Peace River to transport patients back to Edmonton for specialized medical care at the Stollery. In addition, the transport team introduced a mobile simulation pilot program last year, funded by the Foundation, which has Stollery teams training medical staff in remote towns and cities on how to care for kids in various scenarios while they wait for the transport team to arrive. Please read “Remote Access” on page 18 to learn more about how kids across our province are benefiting from this important and innovative program.

Another avenue with unlimited potential to reach people in need and share expertise in new, profound ways is the world’s ever-growing social network. In this issue’s One to Watch on page 22, you’ll meet Ashley Radomski, who received funding from the Foundation to create an Internet-based anxiety treatment for teens.

STOLLERYKIDS.COM

PHOTOS: RIYAZ SHARAN

LINES INTERSECTING. GROUPS OR SYSTEMS WORKING

Ashley, a researcher and graduate student with the University of Alberta’s department of pediatrics, is studying the treatment experience of youth who participate in the Breathe program. This interactive, online program features a series of educational modules for teens and includes telephone and email support to help manage anxiety.

The younger population is just one demographic the Foundation is building a network around. We are excited to introduce a new program later this year, the Great Bear Society, which focuses on the other end of the spectrum and the importance of legacy giving.

The late Orest Kotyshyn is a prime example of how people choose to help kids by leaving a will or estate gift. In “Uncle Orest’s Gift” on page 36, Orest’s nephew Terry speaks proudly of how his uncle left a large portion of his estate to the Foundation because he wanted to leave something “that has some long-term benefit.” We hope this story of love and compassion inspires others to leave a legacy gift to create brighter, hopeful futures for kids who are sick and injured.

After all, the literal meaning of philanthropy is “love of mankind” and, while some of the world’s most famous philanthropists include the likes of Warren Buffett and Bill Gates, I consider all of you who support our Foundation to be a network of philanthropists on a smaller, but no-lessimportant scale.

Thank you for taking the time to read this issue of Heroes. Stay warm, stay connected and have a healthy, happy winter season.

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Fore the Kids WHEN THE BEER HUNTER PUTS ON ITS annual golf tournament, it’s all “fore” a good cause: the Stollery Children’s Hospital Foundation.

Over the past seven years, the bar and grill – with locations in west Edmonton, St. Albert and Spruce Grove – has raised almost $120,000 for the Foundation through the tournament, which is a figure to be proud of.

“We’ve done our cheque presentations and put them on all our social media and on our in-house TVs,” says Diandra Schmidt, marketing co-ordinator for the Beer Hunter.

Owners Shannon and Curtis Mellott have been dedicated to the Foundation’s cause for several years now, and it’s something that’s near and dear to the hearts of many of the Beer Hunter’s staff.

“It’s a great cause, and a lot of people we know have children who have been treated [at the Stollery], and been treated very well,” Diandra says.

ALMOST

$120,000

The golf tournament is invitation-only and, in recent years, had to be pared back from 144 to 128 golfers. There are sponsors at each hole raising money for the Foundation through raffles, longest drive contests or longest putt contests.

Golfers can also bid on Beer Hunter managers, servers and bartenders to serve as their caddies for the day. “[The golfers are] friends of employees, regulars and a lot of our reps,” Diandra says. “We reduced to invite-only because it does sell out, and this way it’s more personal.”

Aside from the golf tournament, the Beer Hunter also hosts other events throughout the year to raise money for the Foundation, including a themed party challenge between the managers at the three locations each year. Plus, the Beer Hunter is a major sponsor of two other fundraisers for the Foundation: Naomi’s Ride, a day-long motorcycle ride; and Mission Stollery, a paintball tournament put on by Young Guns Paintball.

Supporting the Stollery is something the folks

RAISED at the Beer Hunter aim to continue doing well into the future. “It’s really good for morale – not only for our customers, but for our staff as well,” Diandra says.

Pounding the Pavement for Pastry MORE THAN

GETTING PEOPLE TO PARTICIPATE IN A FUN run can be tricky. But Stephanie Barnes has figured out a way to motivate people to raise money for the music therapy program at the Stollery Children’s Hospital. It’s right there in the name of the event: Edmonton’s Annual Run for Pie. At the end of a five- or 10-kilometre course, a slice of your favourite pie is waiting for you at the finish line. And kids who take part in a one-kilometre run get a handcrafted cookie medal.

“It’s a way to reward yourself for a little bit of effort,” says Stephanie, who co-directs the race with her husband Gary and friend Jenny Cote. “You never know where somebody is in their life – a 5K might be the hardest thing they’ve ever done, or maybe the 10K is the easiest race they’re going to do that season. But you should be rewarded for your efforts at the end.”

The Run for Pie, which is held every May at Rundle Park, is a tribute to Stephanie and Gary’s son, Aidan, who battled cancer for much of his short life, passing away in 2011 just a day shy of his second birthday.

“When he passed away, we wanted to do something that would help his memory live on,” Stephanie says.

Music therapy helps patients in children’s hospitals relax, grow, socialize and even communicate. The Barnes family was introduced to music therapy during Aidan’s proton beam therapy treatments at

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$15,000 RAISED

the Massachusetts General Hospital in Boston, and they returned to Edmonton determined to help set up a similar program at the Stollery.

The first Run for Pie was held in 2013, and since then, it has raised more than $15,000 for the Stollery Children’s Hospital Foundation to direct toward the music therapy program. Stephanie says the goal has simply been to see the event grow each year, and she hopes that continues into the future. “Knowing we’re doing it for such a special little guy, that helps keep us motivated.”

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Hitting the Links WHAT STARTED AS SOME FRIENDS FROM NEWFOUNDLAND getting together to play a round of golf has turned into so much more, and it all helps the Stollery Children’s Hospital Foundation.

The Newfie Classic golf tournament is held every year at a course in the Edmonton area to raise money for the Foundation. Darren Brenton, who co-organizes the tournament with Trevor Rideout, says that it’s a good time, but they always keep their main goal in mind out on the links.

“Being out there with your buddies is fun, but at the end of the day, we try to raise the absolute most money we can to give to the Stollery,” he says.

For the first few years, the tournament raised money for the Janeway Children’s Health and Rehabilitation Centre in St. John’s, Newfoundland and Labrador. But seven years ago, the focus shifted, with all proceeds being donated to the Stollery – about $43,000 in total over that time through registrations and auction items.

“A friend of my wife who she teaches with, she lost her little boy at six weeks old,” says Darren, whose day job is in quality assurance for an oil and gas company in Edmonton. “They spent pretty much the whole six weeks at the Hospital. So we started donating the money in his name: Frazer MacDairmid.”

In 2016, though, half the funds were donated to the Canadian Red Cross to help with emergency relief efforts after the wildfires that ripped through Fort McMurray.

The Texas scramble tournament has grown over the years, with about 130 participants in 2016. That growth has been due in large part to a growing number of sponsors, including 95.7 CRUZ FM, helping to get the word out. Still, most of the participants are ex-East Coasters who hear about it by word of mouth.

“We kind of have a core group that’s there every year. It’s probably 40 or 50 guys who we know are going to be there every single year,” Darren says.

He hopes that the tournament will continue into the future and eventually crack the $20,000 mark in a single year. “For something that a bunch of buddies ABOUT just slapped together, it’s starting to get pretty big.”

$43,000 RAISED

Serving Up Charity IT’S ONE OF EDMONTON’S MOST EXCLUSIVE CAFÉS – ONLY open one day a year and no reservations taken. But the Cul de Sac Café definitely has a kids’ menu.

Every year for the last three years, Eliza and Tess Filipchuk have recruited their parents and friends to help cook dishes and serve them to neighbours, opening up their home in Edmonton’s Rhatigan Ridge neighbourhood in an effort to raise money for the Stollery Children’s Hospital Foundation. At their last Cul de Sac Café in October 2016, the girls served at least 92 people and raised almost $4,400.

“We cook, we set up, we do stuff like that,” says Tess, 9.

Their mom, Delphine Brooker, serves as head cook, while their father Dave is the barista. The café’s menu includes such family favourites as salads, homemade strawberry lemonade and asparagus soup.

“The kids all think asparagus soup is [gross]. But the adults are like, ‘Ooh! Asparagus soup!’ ” Eliza, 11, says. “And then the kids try some and they’re like, ‘Ooh!’ ” Last year, there was also a table at the café with jewelry and other “[The girls] are familiar with the Stollery through that, and they’re pasgoods for sale to help raise some more money.

The family has a long history with the Stollery Children’s Hospital sionate about the Stollery,” Delphine says. “At the gala, you see the kids Foundation; every year since they moved to Edmonton, they’ve attended there and they have videos – they’ve been exposed to what the Stollery the Snowflake Gala fundraiser at the Shaw Conference Centre. does and what it means.”

STOLLERYKIDS.COM

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Levelling Up For the Stollery ON THE MORNING OF NOVEMBER 7, 2016, CHRIS SMITH SLEPT in. But he had earned it.

That’s because, just the day before, Smith and about 240 other gamers wrapped up Extra Life Edmonton, a marathon 25-hour (thanks to Daylight Savings Time ending) gaming session held at the Mayfield Toyota Ice Palace at West Edmonton Mall to raise money for the Stollery Children’s Hospital Foundation.

The Edmonton event raised almost $20,000 over the weekend, bringing the local fundraising total for 2016 to more than $190,000.

Considering it started in 2012 with only 30 gamers at Startup Edmonton, Chris – the event’s primary organizer – is proud to see how much Extra Life has grown in the city.

“It’s not the easiest thing to convince people who are less socially active to get together – [gamers] are used to sticking to ourselves and knowing what we know,” he says. “But getting out of your comfort zone, so to speak, and coming out to this event, it’s awesome to see so many people with the same passion.”

Extra Life participants can play just about any kind of game – board games, video games, assembling puzzles – to collect pledges for local children’s hospitals. Organizers supply participants with power, an Internet connection and space to set up whatever they want to play.

Extra Life events were first held in 2008 and have since spread across the world. They have raised more than $22 million for Children’s Miracle Network hospitals like the Stollery. Chris says he got involved because he knows how much the Stollery means to Edmonton and the rest of northern Alberta, both in the present and the future.

Speaking of the future, Chris hopes the event will continue to grow going forward, to the point where there are fewer questions about what it actually is and more about how to get involved.

“I’d like to see every gamer doing something to help out the community,” he says. “I’d like to see it do as much as it can. The more money we raise, the better.”

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$20,000 RAISED

Big Steps Toward Improved Care STUDENTS AT DELNORTE SCHOOL IN INNISFREE ARE HELPING sick kids in northern Alberta get the care they need, one step at a time.

While it’s officially called the Cancer Walk, the event, held every September, brings every student in the Grade 1 to 12 school together to raise money for the Stollery Children’s Hospital Foundation. In 2016, they raised a total of $1,175.

“It’s a tradition for us,” says Leah Sacha, who teaches English and social studies to students in Grades 7 to 12. “[The students] all know that it’s coming. Sometimes we’ve had fairs with it, or a fun day with a slip ’n’ slide. But it all depends on the weather.”

Innisfree is located about 140 kilometres east of Edmonton, but when children there need specialized medical attention, they turn to the Stollery.

Leah says there have been several students at the school who have needed the Stollery’s facilities and expertise, including one young boy who was diagnosed with leukemia.

“You see a lot of people, when you go to the Stollery, who are being flown in to get those services, and you see the hardship on the parents

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from that distance,” she says. “For our community, it’s not that far, but it’s still a world-class hospital, and you have a lot of confidence in that.”

The Cancer Walk started in 2013. Leah says the atmosphere in the school is awesome on the day of the event, and she thinks it will continue well into the future.

“It’s very positive. The kids are excited. It’s a fun day for them,” she says, adding that students have also put on fundraisers in the past for other cancer charities, usually later in the academic year.

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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, benefiting sick and injured children. We hope you will have an opportunity to enjoy or participate in these activities. For more information, and a complete list of upcoming events, visit stollerykids. com/events. For more information on fundraising targets and expenses, please contact the Foundation at 780.433.5437.

6TH ANNUAL STOLLERY FAMILY DAY CLASSIC DATE: February 17 to 20, 2017 LOCATION: Terwillegar Rec Centre, 2051 Leger Rd. NW The Stollery Family Day Classic is focused on children, families, active living and good health. The hockey tournament promotes awareness and support for the Stollery Children’s Hospital among youth and the community at large. For more information or to volunteer, sponsor the event or donate items to the silent auction, visit familydayclassic.com.

WFG HOCKEY CLASSIC DATE: April 8, 2017 TIME: 1 p.m. to 11:45 p.m.

LOCATION: West Edmonton Mall Ice Palace / River Cree Resort and Casino World Financial Group will be playing a hockey game at West Edmonton Mall with a reception afterwards at the River Cree Resort and Casino.

Tickets are $125 each. There will be live and silent auctions, a hypnotist, live music and dinner. Please contact Jarek at jarek.chin@gmail.com or 780.281.1881 for tickets or more information.

MAYHEM COSTUME PARTY HETLINGER TAEKWON-DO INVITATIONAL DATE: March 18, 2017 LOCATION: Clear Vista School, 4510 47 St., Wetaskiwin Hetlinger Taekwon-Do School in Wetaskiwin is hosting its annual tournament at Clear Vista School. The tournament is open to Unified Taekwon-do International Members throughout Alberta and Saskatchewan.

The tournament draws an average of 140 competitors ranging in age from four to 60 years old. Proceeds from the concession stand and a raffle will be donated to the Stollery Children’s Hospital Foundation.

For more information, please visit hetlingertkd.com.

STOLLERYKIDS.COM

DATE: May 13, 2017 TIME: 8 p.m. to 2 a.m.

LOCATION: Meadowlark Community Centre, 15961 92 Ave. NW Mayhem is a fun 18-plus fundraiser that celebrates halfway to Halloween with a costume contest, live local bands, a DJ and a licensed bar. Tickets are $10 each, and proceeds from ticket sales will be donated to the Stollery Children’s Hospital Foundation. For more information, please contact Trevor at 780.504.3734 or at t_wear@hotmail.com.

TEDDY BEAR FUN RUN DATE: May 13, 2017 LOCATION: Rundle Park, 2909 113 Ave. NW Register your team for the inaugural Teddy Bear Fun Run! Walk, stroll or run individually or as a group. Donations will support family-centred care at the Stollery Children’s Hospital. To register or pledge a participant, please visit teddybearfunrun.com.

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With the help of his mom and the Stollery Children’s Hospital, Jacob Martens’s personality shines through his disabilities

PHOTOS: DARRYL PROPP

BY Glenn Cook

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feature HERO

STOLLERYKIDS.COM

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OME DAYS, EIGHT-YEAR-OLD JACOB MARTENS only version of life he has ever known. We’re pretty grateful just doesn’t want to get out of bed. Other days, he for what we’ve got.” can’t wait to get the day started, put on a lime green T-shirt and joke around with his mom, Ali, as she ON A NORMAL DAY, JACOB WAKES UP ANYWHERE FROM works away in the kitchen of their home in Grande Prairie. 6 a.m. to 9 a.m. He has been hooked up to a breathing machine, This may sound like pretty typical behaviour for an eight- an oxygen monitor and a feeding tube all night, so Ali jokes year-old boy, but there’s really nothing typical about Jacob. about him sounding “like an old man” because of the coughOn a Tuesday in late May 2008, Ali was about 24 weeks ing and sputtering. Once he is ready, Ali takes off the breathpregnant with her first child and feeling “horrible,” so she ing mask, does some chest physiotherapy, administers an went to the hospital in Grande Prairie. Everything seemed array of inhaled steroids and carries out some personal care fine, but she was referred to an obstetrician-gynecolo- tasks. That’s a lot of activity for first thing in the morning, gist – which usually doesn’t happen until 28 weeks – and so she then gives Jacob a toy and lets him relax in bed for 15 got an appointment the next day. There, she got up on the minutes to an hour. table for an exam and the doctor found she was five centiWhen Jacob is ready to get up, Ali changes some of his metres dilated, which was well past being safe to be up- dressings and does more personal care tasks, and then she right. She stayed on that table lets h i m pick out what he until an air ambulance ar- “Some might say that his quality of life wants to wear. She’ll show him rived to transport her to the shirts, holding them isn’t what it could be. But it’s the only different Royal Alexandra Hospital in close to his face and asking life he and I have ever known together. yes-or-no questions, giving Edmonton.

For us, it’s perfect,” says Ali Martens. him as much time as he needs At the Royal Alex on Thursday, Ali was given a shot of to process the information and steroids to help the baby’s lungs develop and a shot to help make a decision. “We try to give him as much autonomy in stop her from going into labour; doctors explained that, if what’s he doing [as possible] – these are his choices, this is she gave birth that week, the baby likely wouldn’t survive his life, this is his body. The rest of us so ridiculously take more than 24 hours. By Saturday, she had indeed gone into for granted being able to communicate these things to the labour and, with the contractions threatening to crush the people around us,” Ali says. baby, she underwent emergency cesarean section surgery.

“He’s super into bright colours, like yellow, orange and Little Jacob had entered the world much earlier than red,” she adds. “And lime green – anything that’s lime green, expected. he’ll find it.”

Having gestated for fewer than 28 weeks, Jacob was clasJacob also really enjoys listening to music, especially live sified as a “micro-preemie.” As a neonatologist explained music. Ali recently took him to a classical music concert for to Ali before she gave birth, micro-preemies can have the first time “and he thought it was pretty cool.” But his life-threatening complications in four main areas: bleeding taste in music goes far beyond that – Ali says he enjoys playin the brain; bleeding in the lungs; holes in the heart; and ing everything from Beyoncé and Carole King to even a little holes in the bowel. Despite a relatively calm first 48 to 72 bit of heavy metal on his iPad. “But he’s not as big of a Beatles hours, Jacob wound up developing problems in all four areas fan as I’d like him to be,” Ali says with a laugh.

Jacob shares his mom’s love of laughter; Ali recalls fondly and had to be transferred to the Stollery Children’s Hospital; there were numerous times when Ali and the doctors how, when he was younger and learning his ABCs, he would laugh whenever she messed up the alphabet, on purpose or thought he wouldn’t make it.

However, despite the slim chances of survival, Jacob beat not. These days, he sometimes plays tricks on his mom: “He’s the odds, although he was 11 months old before he could got the ability to find a way to be a pain in the butt and think come home from the Stollery for the first time. Today, Jacob it’s hilarious!”

These are just a few small aspects of a big personality that uses a wheelchair and deals with severe cerebral palsy, hydrocephalus, blindness, auditory neuropathy, and issues shines through Jacob’s disabilities. “I think he comes across with talking, swallowing and breathing. He has had more as a very old soul and a very calm kid,” Ali says. “Most people than 20 shunts to drain fluid from his brain, and had under- that interact with him that don’t know him very well, when gone 44 surgical procedures in total as of December 2016. they first meet him, he has this ability to make people cry But Ali says she has never focused on Jacob’s disabilities; happy tears. He touches people – not with his hands, but she has only ever focused on what he can do and what each with his heart.” surgery could possibly do to make his life even a little bit ONCE HE’S OUT OF BED, JACOB TAKES PART IN A SCHOOL better.

“Some might say that his quality of life isn’t what it could program at home with an educational assistant from the be. But it’s the only life he and I have ever known together. Grande Prairie Public School District. In the past, efforts For us, it’s perfect. We love living like this,” she says. “It’s have been made to integrate Jacob into a classroom setting, the only version of motherhood I have ever known. It’s the although trips to the hospital sometimes got in the way of 12

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

that. “My main goal is life outside the hospital right now,” Ali says. “Social interaction and community integration are goals of ours, but they have to come after personal safety.”

In the afternoon, Jacob has some downtime, which often includes blankets and a movie. That often lasts until about 3 p.m., at which point it’s time to get up and get active until suppertime. Activities at this point in the day could include using a walker or a swing, but Jacob’s favourite is bouncing on a big yoga ball.

After that, Jacob gets in his wheelchair and “supervises” his mom as she makes dinner. “I’m a huge fan of having people here with us for meals,” Ali says, “because I think that type of social interaction at a dinner table is super important. It’s something that I try to include him in every single day.”

By 7 p.m., once dinner is done, it’s time for Jacob to get ready for bed. With the help of overhead lifts, he has a bath, medications are given and other personal care tasks are performed.

He also has to be reattached to his breathing machine, oxygen monitor and feeding tube. By herself, it can take Ali one to two hours to go through the routine.

“It’s a lot of work, but it’s also ridiculously fun,” she says.

STOLLERYKIDS.COM

“That kid loves to be in the tub. He thinks it’s hilarious to be naked, like I think most little boys do. He appreciates and is comfortable with all the steps and stages of personal care.

We talk about it and we do things together.”

FORTUNATELY, ALI DOESN’T HAVE TO DO EVERYTHING herself. She manages a team of caregivers helping out and keeping an eye on Jacob, both through the day and through the night. Jacob also has what Ali calls a “companion,” a young woman who spends a couple of hours with Jacob on Sunday afternoons reading, colouring and watching movies. “I think it’s important to have a relationship that’s not with a caregiver, that’s not with a family member. I think he needs a friend,” Ali says. “And because of who he is, that type of relationship needs to be facilitated. And that’s OK.” While she has support in Grande Prairie, the Martens family still has a strong connection with the Stollery Children’s Hospital in Edmonton, which has proven a valuable resource in helping them live their lives in the comfort of their home and their hometown through their extended network of care.

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“The professionals in that health-care facility not only knows they’re in the best interests of her son, who has spent saved his life about a gazillion times over, and provided more than 700 days of his young life in that building. “I think therapeutic interventions all the way from brain surgery to our relationship with the Stollery is a little more comfortphysical therapy, but they’ve also guided me toward [prov- able than some parents have expressed to me. They’re like, incial programs]: ‘This is how you find home care in Grande ‘Ugh, we have to go to the hospital.’ But that’s not how I feel.

Prairie, this is how you find a vendor for oxygen’ – these I’m like, ‘We’re going to the Stollery – I’m finally going to types of things,” Ali says. “If I get some help. Let’s go!’ … Every take my son to the emergency time we go there, we go there “I hope that Jacob’s mark on this room in Grande Prairie, I have knowing the help we need is enough of a relationship with there. I don’t begrudge that world is as big as possible. I hope the nurses and physicians in that he can touch as many people as place, and I don’t begrudge our that emergency room that I can need of it, because this is the possible, and we can share with as say, ‘This is Jacob; please call only life we’ve ever had.” many people as possible that severe the Stollery.’ ” In the meantime, though, Ali disabilities do not mean a lack of Still, trips back to Edmonton also spends time advocating on to see the specialized team at behalf of other families with quality of life,” says Ali Martens. the Stollery are always necesdisabled children in Grande sary. Ali says the goal is to be Prairie, working to get policies in Edmonton every eight weeks, but they’re usually in the changed so they can enjoy the same quality of life that Jacob city every four to six weeks. In the winter, she tries to stretch has. In fact, she says, attitudes have changed greatly since out the trips a little bit so that she can drive during daylight she brought Jacob home, and people in the city are much hours. “I was raised in northern Alberta; I can drive in the more ready to accommodate those with disabilities. Howsnow. But what I don’t like is driving in the dark with Jake. I ever, there’s still a long way to go. can’t see what colour his face is, so it’s harder to manage his “I hope that Jacob’s mark on this world is as big as posbreathing.” sible,” she says. “I hope that he can touch as many people as But Ali – who also serves on the Stollery Family Centred possible, and we can share with as many people as possible Care Council – is happy to make those trips because she that severe disabilities do not mean a lack of quality of life.”

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

BY Glenn Cook

tech FILES

Small Steps, Big Journey

PHOTO COURTESY OF RIFTON

The Rifton Pacer Walker is a major tool in getting kids at the Stollery moving again

WALKING ON SUNSHINE: The Rifton Pacer Walker helps kids of all ages with a wide range of ailments gain the confidence to get moving on their own feet.

MANY YOUNG KIDS GET A LOT OF JOY OUT OF JUST BEING ABLE to move and explore everything around them. But for a myriad of reasons, some patients at the Stollery Children’s Hospital can’t partake in that simple joy very easily. That’s where the Rifton Pacer Walker comes in.

This specialized piece of equipment in the rehabilitation department helps children who need high levels of support maintain natural standing and walking positions using chest and hip harnesses, as well as the stability of four wheels. It allows kids with a number of different conditions, who range in age from about 15 months to 18 years old, to stand on their own two feet and take steps toward getting better.

“Whenever a trauma happens, one of the first concerns a family has, physically, is, ‘When is my child going to walk again?’ … The Rifton Pacer Walker gives us the opportunity to show those families that huge accomplishment,” says Lara Sreibers, a physical therapist in the inpatient ward of the rehabilitation department of the Stollery.

Lara recalls a couple of different examples of kids who have benefited from the Rifton Pacer Walker. One little girl was in the Hospital for complex cardiac surgery, and while her muscles had lost strength, she had also lost the confidence and courage to move. But with the walker, she was supported and was able to take steps on her own again. Other patients overcoming scoliosis are able to have their halo gravity systems – which work to straighten their spines – attached to the walkers to do activities and interact with their peers. “[The walker] offers a variety of options for therapists to help kids interact and move around,” she says. “It’s everything from just using the STOLLERYKIDS.COM

frame of the walker to five or six different levels of support.”

As much as the Rifton Pacer Walker helps kids, though, it also takes pressure off caregivers like Lara. The support it provides means that the number of therapists needed to look after a patient can be reduced from three or four to just one. “Without the walker, we’d be down on our hands and knees, guiding the child’s feet to move. But now we can stand upright and engage kids in fun activities that motivate them to take steps,” she says.

Currently, the Hospital has two Rifton Pacer Walkers at its disposal, one of which was funded by the Stollery Children’s Hospital Foundation at a cost of about $3,500. But Lara says they’d like to have at least four – they come in four different sizes: mini, small, medium and large – to accommodate the large age range the Hospital serves.

The Foundation is looking to fund more walkers through proceeds from its annual Snowflake Gala, held every December. Lara says the support of the Foundation is instrumental in the work done in the rehabilitation department.

“It’s a huge part of what we can provide the kids from a rehab perspective. There’s only so much we can do with our hands and our minds. To have this type of equipment in our toolbox to use and have these kids interact and get up and moving, it’s so important.”

Help us purchase three more Rifton Pacer Walkers. Call 780.433.KIDS or visit stollerykids.com to donate today.

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PHOTOS COURTESY OF JENNIFER DORWARD

alumni FILES

BROTHER AND SISTERS: Since a kidney transplant in 2013, Jax Dorward (centre) has cherished the time he has been able to spend with family, including sisters Jessica (left) and Julia (right).

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Family Bonds

After a kidney transplant from his father, Jax Dorward cherishes the time he spends with his family

BY Steve Macleod

JAX DORWARD REFERS TO NOVEMBER 13 AS HIS SECOND helping him to get back on his feet – that is, until December 2012. birthday. It was on that day in 2013 that the now 18-year-old Symptoms of his kidney disease resurfaced and, after a month in underwent a kidney transplant – the donor was his father, Geoff – care at the Stollery, it was determined that his kidneys were failwhich allowed Jax to start feeling healthy and begin to live again. ing. Jax underwent another surgery to insert a dialysis catheter “He went through some rough patches, but he’s doing much and he was put on the kidney transplant waiting list. better now,” says his mother, Jennifer.

Jax was on dialysis for 10 hours every night for the next 10 Three years on from Jax’s “transplantiversary” and he is much months until his father gave him one of his kidneys on November happier spending the autumn months hunting with his father, 13. Both Jax and Geoff emerged from their surgeries healthy. rather than sharing a hospital room. “He loves being out in the “It was going good for 10 months after the transplant until Jax bush and hunting with his dad,” Jennifer says. “It’s special bond- fell ill again and had a rejection,” Jennifer says. ing time with dad.”

Steroid treatment saved the kidney and put Jax back on track Jax’s mom still gets emotional when discussing that day at the to getting healthy. His regular checkups at the Hospital started to Stollery Children’s Hospital. “It was really tough to have both get pushed back, from every month to every two months, then my men in there,” Jennifer recalls. every three months. Today, Jax vis“Geoff went into surgery at 7:30 a.m., its the Stollery every four months for “He loves being out in the then Jax and I met him in the hallroutine checkups and he hasn’t had an bush and hunting with his way before Jax went into surgery. It overnight visit since he’s transitioned was tough to have a whole day to get dad,” Jennifer says. “It’s special into adult care. through. I was going from one end Jax has worked hard to regain some bonding time with dad.” of the floor to the other, trying to be of his strength and transition himself there for my husband and my son at the same time.” in and out of his wheelchair. He’s back at school in Grade 12 at The living transplantation took 12 hours and although both her St. Joseph High School and, like most teenagers, he is looking men were in surgery, Jennifer was comforted by a support group forward to graduation in the spring. He also enjoys playing video of about 20 to 25 people, which included family, friends and the games and spending time with his two sisters, Julia and Jessica.

Stollery staff. “The staff at the Stollery are comforting and talking “Jax loves being around the continuous support of many friends to you the whole time, and know all the questions to ask,” Jennifer and family throughout his journey,” Jennifer says. says. “They make you feel like family.”

The staff had been making the Dorwards feel like family for Jax and his dad spending special bonding time together several years. Jax was diagnosed with FSGS Kidney Disease at five years old and, since then, has been making regular visits to the Stollery for a growing list of medical challenges. In addition to the kidney disease, Jax was also diagnosed with hereditary spastic paraplegia and hearing loss.

Jax’s hearing loss eventually stabilized and he learned to communicate with people around him using lip reading, sign language and hearing aids.

However, the hereditary spastic paraplegia progressed to a point where Jax became fully dependent on a wheelchair. The spasticity pulled his hips out of joint, and he required double hip surgery to repair and rebuild the joints. The direction of Jax’s feet was affected by the illness, so he required tendon lengthening in his ankles.

A baclofen pump was also inserted into his abdomen to deliver the medication directly to Jax’s spinal cord in an attempt to control the spasticity. All told, Jax has undergone more than 25 procedures, including four major surgeries.

The efforts seemed to be paying off and Jax’s physiotherapy was STOLLERYKIDS.COM

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team work

PhoTo: BluEfIsh sTudIosvWv

Remote Access

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

The Stollery’s pediatric critical care transport team not only brings kids from rural areas to Edmonton for care, but also trains staff in those areas to deal with situations until they arrive

BY Glenn Cook

STOLLERYKIDS.COM

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W

HETHER THEY HAVE CHRONIC DISEASES OR HAVE commented that, ‘This is what we talked about doing in sim, so had sudden accidents, children across northern Al- we ended up doing that and this is how it worked,’ ” Brittany berta often need specialized pediatric care and hospi- says. “If anything, it has been more relationship-building, and tals. But sometimes, in rural areas or remote cities like a lot of people have said they feel more comfortable with how to Grande Prairie, that kind of specialized care isn’t available. That’s treat their [pediatric patients].”

Without the funding from the Stollery Children’s Hospiwhere the pediatric critical care transport team at the Stollery tal Foundation, Brittany says the mobile simulation program Children’s Hospital steps in.

The team travels to referral centres like Fort McMurray and wouldn’t be a reality. “I feel like I get so much reward from this Grande Prairie to collect young patients – they can range in age program, and the kids get rewards from it. The more we do it, from newborn to 17 years old – and brings them to Edmonton to the more likely we are to see improvements and better care for get the medical care they desperately need at the Stollery. Usually, the kids, which is the ultimate goal.”

When they’re not transporting a registered nurse and a respirapatients or running simulations, tory therapist (RT) accompany “I feel like I get so much reward from members of the pediatric critical the child back to the city; about 80 per cent of their trips are made this program, and the kids get rewards care transport team work in the pediatric intensive care unit and without a physician on board. from it. The more we do it, the more Team members mostly make likely we are to see improvements and throughout the Stollery, working with different departments trips via fixed-wing aircraft, albetter care for the kids, which is the to make sure patient transithough they have also travelled ultimate goal,” says Brittany Munce. tions into and out of the PICU go in STARS Air Ambulance helismoothly. At any one time, there copters, as well as on the ground if weather conditions aren’t favourable for flying or the patient are usually enough transport team members available to handle is close by. On average, the team completes about one transport two transports.

Brittany believes services like the pediatric critical care transper day. Sometimes, those trips involve hooking patients up to extracorporeal life support (ECLS) systems and monitoring them port teamm are very important, and they can help bring some calm to what might otherwise be chaotic situations for patients, closely until they arrive in Edmonton.

“Really, anything a child could get sick with or could have is what their families and medical staff in remote areas.

“A lot of research shows that the outcomes are better for kids we deal with – anything you could think of,” says Brittany Munce, a who are transported by a team that specializes in pediatric care registered nurse on the pediatric critical care transport team.

That kind of specialized work takes preparation, both on the and intensive care medicine,” she says. “But I also think that, part of the team and on the part of the doctors and nurses who when we show up to a lot of these sites like Grande Prairie or Fort look after patients before they arrive. To that end, starting in McMurray, for the kids we do see quite often, as soon as we walk March 2016, the Stollery Children’s Hospital Foundation funded a in the door, they’re happy to see us. We know these kids, we mobile simulation pilot program, in which Brittany and members know the ins and outs of what they’re diagnosed with and what of the team travelled to some of these rural centres and partnered their treatment is. We’re a familiar face; there’s a comfort that we with them to train medical staff on various scenarios, which are have with them and they have with us.”

The team is also an important cog in the wheel of health care based on an assessment done beforehand that determined what in northern Alberta, allowing kids from Grande Prairie, Fort Mcareas staff felt they needed to know more about.

“Nurses, RTs, lab techs, doctors, paramedics – whoever wants Murray and beyond – teams have travelled as far as Winnipeg, to show up can show up,” Brittany says, adding that the simula- northern British Columbia and the Northwest Territories to bring tions are all based around patients that the pediatric critical care young patients back to the Stollery – to get the care they need when they need it. transport team would normally be called in to deal with.

“I think the referral centres and their staff do a great job of “We’re simulating up until the transport team would arrive,” she says, adding that the simulations increase staff’s comfort level stabilizing kids and managing the ones that are stable up there,” with caring for kids before the team arrives, because these are Brittany says, “but that point where the child transitions from stable to unstable, that’s where our unit and our team become a situations that most sites don’t deal with every day.

The sites visited include Grande Prairie, Fort McMurray, High lot more important. We’re not only there to transport the kids, Level, Fort Vermilion and Peace River. So far, the feedback from but we’re there from the beginning; once they start to become medical staff in those municipalities has been very positive, and unstable, one of the first things [a doctor] will do is get on the many have asked for the team to return. “We’ve shown up to these phone and consult with an intensivist on our team. It’s nice to sites [after the simulation] to pick up patients, and people have have that extra support.”

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Because everyone deserves a happily ever after With our wedding program, you can make a life-changing difference on your special day for the sickest kids in our community.

We provide invitation inserts, table cards, certificates and more to make it easy for you to: • Make a donation in lieu of wedding favours to honour and thank your guests • Ask guests to make a donation in lieu of clinking glasses or wedding gifts

Visit stollerykids.com/ways-to-give or call 780.431.4604 to learn more about our wedding program.

Photographers: Jess Leigh Artist and JAG Photography

WeddingPrograms_HeroesAd_Nov30.indd 1

11/30/2016 3:16:56 PM

THANK YOU!

Your ticket purchase helped make our 2016 Mighty Millions Lottery a mighty success.

Your support of the Stollery Children’s Hospital Foundation is making a big difference in the lives of the smallest Albertans and their families. Proceeds will fund necessary equipment purchases and vital space upgrades in the pediatric and neonatal intensive care units for our community’s sickest kids.

Congratulations to all winners!

For a complete list of winners, visit MightyMillionsLottery.com

LL #436483, 436485, 436481

one TO waTCh

Ashley Radomski’s passion is mental health, and she’s helping evaluate programs to help kids over the Internet

PhoTo: EugENE uhuad

BY Glenn Cook

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

a

fter finishing her master’s degree in psychiatry

some of the unique preference needs of adolescents. Since we’re in 2013, Ashley Radomski still had a lot of questions to living in a technology age and youth are already inclined to use techwhich she wanted to find the answers. Now, with the help nology in numerous ways every day, having a treatment program of the University of Alberta, the Stollery Children’s Hos- delivered on the Internet increases the chances they will be able to pital Foundation and many other donors, she’s getting the chance find help when they need it the most.”

Ashley herself has received funding for her research through the to do just that.

Ashley is a researcher and graduate student with the U of A’s U of A’s Medical Science Graduate Program Scholarship, the Govdepartment of pediatrics. Under the guidance of Dr. Amanda New- ernment of Alberta, Alberta Innovates-Health Solutions (AIHS), and ton, Ashley has the opportunity to study the treatment experience the Stollery Children’s Hospital Foundation through the Women and of youth who participate in an online mental health program. Dr. Children’s Health Research Institute (WCHRI). Dr. Newton and her Newton and a team of collaborators from across Canada developed team have received funding from the Canadian Institute of Health an Internet-based cognitive behavioural therapy (CBT) program to Research (CIHR) and through money provided by the RBC Foundation to the Stollery Children’s Hospital Foundation and administered help treat adolescents who suffer from anxiety.

“When I was wrapping up my master’s [degree], I knew I through WCHRI. Ashley has also shared her research findings at national and interwanted to continue my studies; I still had more research questions to ask. My master’s was in the department of psychiatry. I assessed national conferences, to local junior and senior high school students, the relationships between cognitive and emotional functioning and to community members at the Style for Stollery event, a fundand disease states in individuals with multiple sclerosis (MS); raiser for the Foundation that also showcased the work of many WCHRI researchers. She says she mental health is my absolute burning passion,” Ashley says. “Throughhopes to partner with other provincial “When I was wrapping up my out my graduate studies, I have and national organizations to further master’s [degree], I knew I wanted share her findings with youth, famnoticed that, despite advances in the health-care community’s ability to to continue my studies; I still had ilies, health-care professionals and understand and treat mental health more research questions to ask,” policy-makers to improve access to treatment. concerns, significant access and says Ashley Radomski.

Ashley says she always had an availability barriers still leave many interest in human behaviour and a without care. I became eager to use my assessment skills to learn more about patients’ needs with the passion for helping others as she was growing up, something she aim to eventually develop effective treatments that will be relevant pursued into post-secondary education. “As soon as I was in university, taking my first psychology course, I could never look back once to them.”

“It’s critical that we support mental health as early on in the life- I appreciated the fundamental role of the brain in defining every part span as possible,” she adds. of the human experience,” she says. “Now, years later, I can look And so she met up with Dr. Newton – with whom Ashley says she back at various points in my life and realize that numerous people I felt an immediate “click” – and she brought her on board to help know have been impacted by mental health concerns. Mental health evaluate the Internet-based CBT program, known as the Breathe affects us all at some point, and I really believe there’s an importance program. Breathe consists of eight interactive and educational in ensuring the best care is made available early on.” modules with personalized homework delivered via the Internet, The pilot trial of the Breathe program concluded in fall 2016; it was and includes telephone and email support. With the Breathe pro- designed to assess study feasibility, program acceptability and inform gram, teens can learn more about what anxiety is, identify unhelp- planning of a full-scale trial that will evaluate the program’s effectiveful thought patterns or behaviours they may be experiencing, and ness. During the pilot trial, participants were able to self-report their then strengthen their coping and relaxation skills to better manage impressions of the program, and it was found that youth satisfaction rates were quite high. But it was also found that only about 30 per cent their worries.

“Anxiety is the most prevalent mental health condition for ado- of participants who started the program actually finished it. The fulllescents. If left untreated, anxiety can persist into adulthood, leading scale trial began in late November 2016, and at the top of Ashley’s list to other health, interpersonal and economic problems,” Ashley says. of questions to answer is why the completion rate is so low if the satis“One of the main advantages to offering treatment to youth earlier, faction rate is so high. often when they’re experiencing mild to moderate levels of anxiety, “There are some interesting relationships between the technois that they can learn strategies that will hopefully prevent further logical features, therapeutic content and the interactions between deterioration in their mental well-being. It can also empower youth technology and youth that emerge with an online program that to continue participating in the management of their own health we’re currently exploring,” she says. “Prior to providing a new into the future – an important ability for them to have.” treatment to youth and families, it’s important to determine not just Meanwhile, delivering the program over the Internet means that whether or not a treatment is effective, but what factors are actually access and availability barriers are broken down, and adolescents contributing to the treatment effects we are seeing. For example, using it have a greater sense of privacy and anonymity. does the degree of program personalization change the level of “[That] is really important because, although there are concerns engagement youth experience? To what extent does therapist suparound mental health stigma for all ages of the population, these port affect the program completion rates of youth? Do differences in concerns are known to be especially important factors in [adoles- youth’s symptom changes emerge based on the treatment componcent] help-seeking,” Ashley says. “An online program can meet ents used in a program?”

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milestone

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One Dollar at a Time Lots of small donations really add up to show Costco’s commitment to the Stollery and other children’s hospitals

BY Glenn Cook

C

OSTCO WHOLESALE STORES ARE

known for the giant warehouse packs of food and other provisions they offer their member customers.

But the retailer also does some massive community charity work – including raising a whole lot of money for the Stollery Children’s Hospital Foundation.

Every year, stores throughout North America hold their Miracle Month of May campaign, selling paper balloons to customers for $1 each to raise money for the Children’s Miracle Network (CMN), a continent-wide non-profit organization that fundraises for children’s hospitals. In northern Alberta, those proceeds are directed toward the Stollery Children’s Hospital Foundation; in 2015, Costco raised more than $700,000 for the Foundation, part of its $8.3-million tally across the country.

Those $1 balloons may be small contributions on behalf of each customer, but they really add up, says Jacqui Howman, Costco’s regional marketing manager for Western Canada – not only in terms of a donation, but also in some staff members’ enthusiastic efforts to promote the campaign. Employees will often take those paper balloons and create massive, intricate displays out of them.

“They created these fun characters out of the balloons that people have purchased.

Some stores have done Star Wars displays or dinosaur themes, or they’ve made the donation number out of the balloons – if they’ve raised $50,000, they [spell out] ‘$50,000’ in the balloons,” Jacqui says. “[It’s] gigantic hearts and kids’ displays that they make out of the balloons and put up all over the warehouses. It kind of smacks you in the face; you know something’s going on. And [staff members] get really excited about it.”

That enthusiasm comes from the personal connections that many Costco employees have with children’s hospitals. Jacqui says the CMN campaign is a “morale booster” among employees because they’re giving back to the community, and specifically to kids.

“There are lots of employees that have STOLLERYKIDS.COM

been touched specifically by children’s hospitals – not just in the Edmonton area, but throughout Canada. You can’t throw the proverbial rock without hitting somebody who has been touched by children’s hospitals – some sort of illness or something where a child needs specific care,” she says. “Sometimes we think about care as long-term illnesses and things like that, but children’s hospitals help with things as simple as burns, how to recover from that without being scarred physically and to deal with the emotional impact of those types of things.

“Really, I think there are a lot of people who are touched that way, whether it’s family or friends, and they all feel the impact. So everybody in the warehouse, all the Costco employees, get behind it so much because it’s a great initiative.”

The Miracle Month of May campaign – which, in fact, runs a couple of weeks into June to mimic the CMN’s major campaign dates – is the only time of year when Costco solicits donations for the “There are lots of employees that Children’s Miracle Network; have been touched specifically by Jacqui says they’re trying to children’s hospitals – not just in the avoid donor fatigue. But the Edmonton area, but throughout stores have been collecting Canada,” says Jacqui Howman. steadily for the past 15 years, and Jacqui says the response is always overwhelmingly positive. “Our members recognize that the CMN campaign is coming and it’s during that month,” she says.

In 2016, the Fort McMurray wildfires had an impact on fundraising for the Stollery, as Costco stores also raised money for Red Cross relief efforts from May 6 to 15. In total, the six Edmonton-area stores raised almost $400,000 for the Stollery while also raising almost $300,000 for the Red Cross. Across Canada, Costco stores raised nearly $2.3 million to help out Fort McMurray. Jacqui says she’s extremely proud of all the employees in the Capital Region stores as they were raising money for two extremely worthy causes at the same time.

But Costco’s philanthropy doesn’t stop there. The stores also hold a fundraising campaign in the first week of September every year to support Breakfast Clubs of Canada, which aims to give children a healthy, nutritious start to their school day and the chance to be better learners by providing meals prior to class. As well, each Costco location – there are currently 94 across Canada – partners with a local school to help improve reading skills in Grade 4 classes by having groups of employees go in and read with students for an hour.

“We like children’s initiatives and that’s where we want to focus our charitable efforts – their health, their welfare, their education,” she says, adding that the company’s commitment to children’s charities has been around at least as long as she has, and she started with the company in 1995.

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E L B A L I A AV NOW! gear and help 17 0 2 r u o y e s a h Purc ss care for provide world-cla their families!

Stollery kids and Available at:

8440 112 Street NW | Stollery Children’s Hospital lobby Store: 780.433.7445 | Fax: 780.430.1076 Mon. - Fri. 9 a.m. to 7 p.m. | Sat. - Sun. - Noon to 5 p.m.

Closed Statutory Holidays

BY Koren Cromwell

volunteer HERO

A Wheely Great Cause After a successful first year, Cody Lakevold and the rest of the Wheels for Wellness team is revved up to do it all again WHEN IT COMES TO RAISING MONEY FOR GOOD CAUSES,

PHOTO: ROB HISLOP

Cody Lakevold is putting the pedal to the metal.

Cody served as chair of the organizing committee for the inaugural Wheels for Wellness exotic car rally and fundraiser, which was held on October 1, 2016. The event was a collaborative effort between the Stollery Children’s Hospital Foundation and the Mental Health Foundation, and offered a chance for luxury car enthusiasts to show off their wheels throughout the city. After the initial luxury car showcase, more than 30 teams rallied and participated in 10 checkpoint challenges, including a slalom Tesla race at one stop. An after-party unveiling the Enbridge Centre (formerly the Kelly Ramsey Tower) capped off the day, courtesy of Pangman Developments.

Cody says the idea and vision for this gutsy undertaking began with Ben Horcica, chair of the Mental Health Foundation. “Ben has grand views for this city. … Initially I was not in favour because it was a logistically [complicated] event, but he was persistent.”

Ben approached the Stollery Children’s Hospital Foundation, who agreed to collaborate. “The Stollery is excellent at logistics and execution. Once they were on board, I said yes,” Cody says.

Together, Cody, Ben and Foundation CEO Mike House assembled a 20-person committee. “Nothing like this had ever been done here; we needed to demonstrate value to both sponsors and participants. It took eight months to organize with amazing talent around the table,” Cody says, adding that corporate support drawn from their connections was crucial to success. As a firsttime event, the risk was high, but he says Edmonton is an incredibly generous community. “[Though] corporate dollars are tight now, it came together just in time. … You can’t do anything like this without corporate support.” Sponsor logos were featured on the cars throughout the city.

Though he wants this family-friendly event to be enjoyable and worthwhile for all involved, Cody doesn’t want the worthy causes behind the event to be forgotten. “The need is great. Dollars impact the kids – the Stollery is dependent on donations.”

Thankfully, he hasn’t personally needed the Stollery’s services, but “every parent understands you want a facility like that.

Your soul is tied up in those little people,” he says, thinking of his three-year-old daughter, Adella. Meanwhile, Cody has been involved with the Mental Health Foundation since 2012 and chaired the fundraising arm for the last three years; the cause is close to his heart. “My brother struggled with mental health STOLLERYKIDS.COM

PHOTO: PAULA GEREIN

“The need is great. Dollars impact the kids – the Stollery is dependent on donations,” says Cody Lakevold.

issues, and in the end it ended his life,” he says of his brother Jesse, who died in an accident in 2015 at age 33.

Every penny counts. More than $192,000 raised – of which almost $23,000 came from private donations – was close to the committee’s target. “For a first-time event, setting the right precedent, providing impact, and getting the word out is more important than the dollars. We want this event to grow,” Cody says.

And the prospects are great for a larger, more public event next year. “As summer approaches, we want Edmonton to think of two things: sunshine and the Wheels for Wellness event,” he says with a grin. “We want Edmonton to own this event. Edmonton is fun and entrepreneurial; I love how the community gets behind its people.”

SAVE THE DATE: Wheels for Wellness 2017 takes place on September 30.

Visit wheelsforwellness.ca for more info.

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PHOTO: EUgENE UHUAD

Meet the specialist

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

SHIFTING Expectations Karen Johnston helps teens with diabetes become more independent adults

BY Glenn Cook

B

EING A TEENAGER AND DEALING

with Type 1 diabetes can be hard enough. But trying to figure out how you’ll deal with the disease when you’re an adult can be even tougher. Turning 17 could mean new clinics, new doctors and new medical responsibilities.

That’s where Karen Johnston and her team at the Stollery Children’s Hospital come in. Karen is a nurse practitioner in the pediatric diabetes education centre (PDEC), helping adolescents with Type 1 diabetes from ages 15 to 17 become experts in their own care and set a course for treatment as they transition into adulthood.

Karen says that, in adult care, patients are expected to take charge of making decisions. “Usually when [patients] come to me, they’re still quite dependent on their parents for decision-making and managing their chronic disease,” she says. “We start teaching them how to do things like self-adjust their insulin, manage illness, book clinic appointments and appointment etiquette.”

This can be just as much of an adjustment for parents as it is for teens, she adds.

“They’re used to being the ones asked all the questions and doing most of the talking.

When [young patients] come in, we start shifting that to the adolescents. We ask the adolescents questions and look to them to answer first. At the end, if the parent wants to add or correct or clarify information, we add that at the end of the question.”

Karen first started her health-care career in 1988 and has worked in just about every department in the Stollery, including the pediatric intensive care unit. She also did relief shifts in adult ICUs at the University

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of Alberta Hospital, where she saw some of the complications that can arise from diabetes.

That, plus a history of diabetes in Karen’s family – she lists off grandparents, uncles, aunts and cousins who have all been afflicted with the disease – made her aware of the devastating effects diabetes can have and determined to do something about them. She started working in the PDEC in 1996, and opened the transition clinic after earning her master’s degree in 2008.

“I’m really passionate about trying to expand people’s knowledge and practices so they can get better control of their diabetes and avoid long-term problems,” she says.

“We just want people to keep moving forward. When there are new technologies or new ways of doing things, it’s based on new research. We should take full advantage of that,” says Karen Johnston.

“Plus I think, at some point, there will be a cure for diabetes, or at least a better way of treating it. There have been huge changes from when I first started. We just want people to keep moving forward.

When there are new technologies or new ways of doing things, it’s based on new research. We should take full advantage of that.”

Having worked in different areas of the Stollery, Karen says without hesitation that she works with, in her opinion, the best team in the Hospital. “It’s the people that keep me here,” she says.

“The doctors are amazingly supportive of me being a nurse practitioner. I’m truly blessed.”

One day a week, Karen also serves as the transition co-ordinator at the Stollery, helping design programs to help teens with other conditions make the jump to adult care. These programs are based on the work she has done with teens with diabetes.

Seeing teens successfully make those transitions into adult care is incredibly rewarding. “We want them to be consumers of health care and to be able to advocate for themselves. And that’s a learning process,” Karen says. “At 17, they’re not adults yet; they still need parents. But we have to start getting them to think about [their care in the future].”

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PhoTos couRTEsy of ThE BRoWN famIly

family philanthropy

Family Formation: The Browns have made giving back to the stollery children’s hospital foundation a family affair.

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Living and Giving After a health scare with one of their boys, the Brown family is committed to giving back to the Stollery Children’s Hospital Foundation BY anglia redding

E

lijah and Micah Brown are happy, healthy Boys

securing new equipment, new uniforms and a renovated locker who, like other kids their age, enjoy hanging out with room. Rob was also named Edmonton’s Top Cop in 2015 for his their friends and playing football like their dad, Rob, a service to his community. As a whole, the family continues to former defensive lineman for the Edmonton Eskimos give through Samaritan’s Purse Canada, Hope Mission and the and Montreal Alouettes in the Canadian Football League. But Mustard Seed. They are also involved in the annual Terry Fox Run, another of their favourite pastimes is a bit out of character for and Amber and Rob volunteer their time at the yearly Cora Cops kids so young: raising money for the Stollery Children’s Hospital and Crepes fundraiser for the Special Olympics.

Foundation.

Since the boys were young, it was important for Elijah and Elijah has been raising money for the Foundation for the past Micah to give back. Amber relates one early Christmas when five years; younger brother Micah joined in three years ago. Inshe and Rob asked the boys to donate the gently loved toys they stead of gifts, the boys ask for monetary donations for their birthno longer played with. “The boys had a great time ‘gifting’ their days, which go directly to their favourite charity. The Foundation treasures away while reminiscing about how much fun they had is very important to them, and for good reason. with [the toys],” she says. “Elijah and Micah agree that we are When Elijah entered the world in blessed and have lots to share.”

2006, he was a normal, robust baby. It Amber is adamant that the family will “We are proud,” Amber says, wasn’t until his one-week checkup that never forget their Stollery experience. “but more grateful that the the doctor noticed he had lost nearly a Elijah sports a scar that Amber says he boys have giving hearts.” pound and a half. The doctor quickly ar“wears like a badge of honour.” When ranged for an ultrasound at the Stollery asked about his future endeavours, Elijah Children’s Hospital. “We were stunned,” says the boys’ mother, says he plans to donate to the Hospital “forever.” He’s eager to Amber. “[Elijah] was the big kid that ate like a horse!” plan a garage sale for donations, and he plans to approach his Elijah was diagnosed with a twisted valve just below his stomschool to host a fundraiser. Micah says the Stollery is his main ach and needed immediate surgery; an attending doctor told charity for the next “three years, then I might switch charities to Amber to call her husband. “Imagine the doctor’s face when a help somewhere else.” large football player thunders in [from practice] for the pre-sur“We are proud,” Amber says, “but more grateful that the boys gery meeting,” Amber says with a laugh. The couple were told have giving hearts. We will also never take for granted the magthat Elijah could face one of three outcomes: he wouldn’t have nitude of expertise and resources it took to save our little boy – we a functional bowel or intestines, which is potentially fatal; he are forever grateful.” would be OK, but would need to wear a colostomy bag for the rest of his life; or – the best option, and the one they went with – he could have surgery to re-rotate his mid-gut and remove any portion of the bowel that had died.

Amber describes being in the Stollery as “the best worst experience of my life. The NICU [neonatal intensive care unit] encouraged me to use the computers to start a blog that could update family on Elijah’s condition. [The staff] let me be as hands-on as the monitors and life support machines allowed, and reminded me to eat and go to the bathroom once in a while.”

Humanitarianism is an essential part of the Brown’s family makeup. Since retiring from the CFL, Rob joined the Edmonton Police Service and has become a school resource officer for Eastglen Composite High School, volunteering countless hours with Eastglen’s football team, the Blue Devils. He was paramount in

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corporate HERO

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Navigating Uncharted Waters Neurosurgery Kids Fund’s new app headed in the right direction thanks to Building Trades of Alberta

BY Glenn Cook

W

hen a Child is admitted for brain surGery

at the Stollery Children’s Hospital, families have a lot of uncharted territory to navigate. But, thanks to the Neurosurgery Kids Fund (NKF), the Stollery Children’s Hospital Foundation and the Building Trades of Alberta Charitable Foundation, those families now have a new tool to help them get their bearings.

In late October, the NKF launched The Compass, a new book and mobile app that guides families through the process when their children need neurosurgical procedures. It not only addresses what might happen on the operating table, but it also touches on other things like finding your way around the Stollery Children’s Hospital or where to find specialized clothing and shoes. It also relays real-life stories from other parents who have gone through the same processes.

“Sure, [parents are] stressed about the surgery, but they’re also stressed about where they park, where they show up, who do they call when they’re worried, how long are they going to be in the Hospital – that’s stuff I don’t think we do very well as doctors,” says Stollery neurosurgeon Dr. Vivek Mehta. “I think it’s this real idea of patient-centred care.”

And The Compass would not have been possible without a $100,000 donation over three years from the Building Trades of Alberta (BTA) Charitable Foundation.

“It’s really awesome,” says BTA executive director Warren Fraleigh. “The women that made that book possible, they’re just such outstanding human beings. Their energy and their ability to get stuff done is beyond any comprehension I have of how people can maximize the utilization of their time. Those women are like superheroes to me.”

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The Compass and the NKF are the brainchild of Melissa Dasilva, know how to get there.’ So we started talking about this concept Melody Willier and Wendy Beaudoin. Melissa and Wendy are both of a book that was a one-stop shop, where they could get all the nurses and all three women have children who have needed brain medical information, but also add medical information from their surgery at the Stollery Children’s Hospital. Wendy says the support own kids’ journeys.” of the BTA has been inspiring.

Soon, Melissa approached Warren about having the BTA sup“The fact that their support was so enthusiastic was great because port the NKF, and he invited them to give a presentation to the it kept us on cue,” she says. “There were days when I was tired, and Charitable Foundation. there were lots of days working on the app when I was actually in “I’ll tell you what, when they made that presentation, there was the Hospital with my daughter, no denying at that point in time and I was done and burnt out. But the passion these women had for “I think it’s this real idea of patientyou have this great relationship what they were speaking about, centred care,” says Dr. Vivek Mehta. with this fantastic donor, and you and that we were going to make don’t want to let them down any a recommendation to our board more than they don’t want to let us down. So I’d spend the extra to support this initiative,” Warren recalls. “I am not normally a couple of hours working on it that you probably would have spent very emotional person, but by the time they were finished, I was watching Netflix.” in tears. You think about your own grandchildren and you think The NKF started when Wendy’s daughter wanted to go to sum- about other things, and you say to yourself, ‘I’ve got to do somemer camp, but no camp would take her due to her medical issues. thing to help here.’ ” With the backing of business owners Aaron and Carolyn Vaage, the The BTA Charitable Foundation raises money for several initiaFund was formed and Camp Everest was established. tives – including diabetes research, prostate cancer research and The idea for The Compass came a bit later after a conversation STARS Air Ambulance – through raffles on job sites where the winbetween Wendy and Melissa. “She and I were having coffee one ner gets 70 per cent of the money collected and the foundation gets day and talking about how, when she brought her son home from 30 per cent. the NICU, she literally had this laundry basket of pamphlets and “We would never have done any of this … without our relationpapers and people she had to call and appointments she had to ship with Building Trades of Alberta,” Wendy says. “All of us work make,” Wendy says. “She said she remembered going home, put- full time, and all of us have sick children, so having the resources ting it on the bed and crying. We were having the conversation to have other people help us get the project done was incredible. about why this is so difficult. I remember apologizing to her – We’ve thought about this idea for years, but to actually bring it to because my daughter is six years older than her son – saying, ‘This fruition wouldn’t have been possible without their support.” shouldn’t be this hard for you. I should have done something that The Compass app is available to download for free through the made this easier for every parent who came after. I just don’t Apple App Store.

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

By Glenn Cook

portrait

Win-Win Situation Mighty Millions Lottery dream home winner says Stollery is a cause near and dear to her heart When a friend Called Cheryl Painter to tell her that her

PhoTo CouRTEsy of JIll PaINTER

ticket number had been drawn from the drum, she didn’t believe it at first. “They saw the draw live on TV, and I thought she was joking,” says the 67-year-old retired banker.

But then the officials from the Stollery Children’s Hospital Foundation called, confirming that she had indeed won the grand prize in the Foundation’s 2016 Mighty Millions Lottery: a $2.3-million dream home in the southwest Edmonton community of Jagare Ridge, plus $100,000 cash.

“I just started to cry,” Painter says of her reaction to finding out she had won. “I was really just so overwhelmed and so happy, I didn’t know what to say.” Part of Painter’s emotion comes from the special connection her family has with children’s hospitals, and with the Stollery in particular. Her daughter Jill works at the Stollery, in the child life department. Jill spent a lot of time in a children’s hospital in Vancouver, where the Painters lived before moving to Edmonton, because of a brain tumour when she was very young.

“Anytime there’s anything for the Stollery – it doesn’t matter if it’s at the grocery store and it’s $1 or $2 – it’s something very near and dear to my heart,” Painter says.

“It’s such an amazing place for children, and there are lots of wonderful stories that come out of there,” she adds.

There were more than 2,400 prizes given out in the Mighty Millions Lottery, from $100 gift cards to local restaurants and retailers all the way up to the grand prize. The early bird prize was a 2017 Porsche Cayenne S and a seven-night vacation on a private island in Tahiti, or $150,000 cash. And the bonus prize was season tickets to the Edmonton Oilers plus $10,000 cash. The Take 50 Add-On winner took home more than $430,000.

The 5,100-square-foot grand prize dream home was built

by Birkholz Homes and came fully furnished. It has a walkout basement and overlooks Whitemud Ravine. Inside, there are five bedrooms – including a master bedroom with a theatre-sized projection screen – an open-concept kitchen, a family room with an adjoining bar, a gaming area, a gym and a hidden room under the stairs.

“It’s really nice – absolutely beautiful,” Painter says. “This was the first time I haven’t gone and toured the showhomes [for lotteries] that I’ve bought tickets for. I bought the ticket because it’s the Stollery, and that was it. I didn’t even know when the draw was!”

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PhoTo CouRTEsy of sTollERy ChIldREN’s hosPITal fouNdaTIoN

“I bought the ticket because it’s the Stollery, and that was it. I didn’t even know when the draw was,” says Cheryl Painter.

2016 was the second year for the Mighty Millions Lottery. In 2015, more than $2 million was raised through the lottery. Proceeds go to funding priority projects at the Hospital, such as improving equipment and upgrading unit space in the pediatric and neonatal intensive care units.

Details of the 2017 Mighty Millions Lottery will be released this fall.

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why I donate

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Uncle Orest’s Gift Late teacher’s gift in his will is helping his legacy live on at the Stollery

BY Glenn Cook

T

ERRY KOTYSHYN LEARNED A LOT OF THINGS FROM

Foundation director his uncle, Orest. But maybe the most valuable lesson was of major gifts Sue McCoy the importance of leaving a legacy. Now, Terry wants to says the organization is share this lesson with others. seeing more and more When Orest Kotyshyn passed away in April 2016, he left a large donors naming the portion of his estate to the Stollery Children’s Hospital Foundation. Foundation as a beneTerry helped Orest get his will in order, and has no doubt his uncle ficiary in their will. would be proud to see the sort of work his gift has helped fund. “ Wi t h e a s y a n d “We had done a bit of talking, and I’m positive it would be some- thoughtful planning, thing he would sit back and look at and say, ‘This is great!’ ” Terry donors can leave a legsays. “I know, through our relatives, that he knew what it’s like acy gift that helps to when children are sick; there’s a lot of time and attention spent, bring about lasting and being in the hospital is not number one on their priority list. If changes that save lives they can be a little more comfortable – and knowing that it’s going a n d c r e a t e b r i g h t to be helping families, and knowing that it’s going to be there for er futures for sick and years to come – I think he’d be just absolutely delighted.” injured kids in our Orest left another sizable chunk of his estate to the University community – a future Hospital Foundation, as well as giving some money to his church. where the sickest kids He was a bachelor and had no children, and made his money have the best chance to live a long and healthy life,” Sue says. through some wise investments over the years.

“The gift Orest left is a lasting statement of his generosity and care But Orest did have a big impact for his community.” on Terry and his other nieces and While plans for the money are “I think that, the more we reach out nephews. After a stint as a minstill being finalized, Terry and his to others, the more we extend a hand eral engineer in the Northwest family are hoping a room at the to make life a little easier for others, Stollery will bear Orest’s name, Territories, Orest moved back to it makes the world a little smaller,” Alberta and got into teaching, fopossibly in the intensive care unit. says Terry Kotyshyn. cusing mainly on math.

“They’re looking at taking the ICU “When I was growing up, he units that are separated now by was more like an older brother than an uncle. We had a wonder- just curtains and actually making them into solid rooms with furful relationship. He is, in some ways, responsible for me actually niture that can accommodate parents,” he says. The University of becoming an educated individual,” Terry says with a laugh. “My Alberta Hospital is looking at using their portion of the donation to desire to learn didn’t match his, but it was his sheer determination convert a room in the geriatric ward into a space where seniors can that got me to where I wasn’t living on the street.” come together and interact with each other, rather than living in Being a teacher, though, Orest had special connections with isolation. many of his students, and Terry thinks it was probably the fact that Terry also hopes Orest’s generosity inspires other people to think he worked so closely with kids over his career that made him want about planning donations through their wills. “I think that, the to leave so much of his estate to the Stollery. more we reach out to others, the more we extend a hand to make “He wanted to leave something for people,” Terry says. “He had life a little easier for others, it makes the world a little smaller. The a little bit of a connection with the [Mazankowski Alberta Heart more we can do that, have a little more empathy in the world, a Institute] because of a relative’s heart attack and triple bypass sur- little more compassion, I think it goes a long way.” gery. But we talked at length; we looked at museums and differAnd to those people Orest has inspired, Terry offers some advice: ent things. But he finally decided on something that would really “Talk it over with your family, so the family knows what’s happenbenefit various people.” ing and that part doesn’t become a surprise. Then make a contribuThe process of setting up the gift was very simple, he adds, with tion that is going to be such that it has some long-term benefit. It’s the help of folks from both the Stollery Children’s Hospital Foun- always nice for an individual to inherit some money from family dation and the University Hospital Foundation. “It was really easy, members, but it’s also nice when it can be used for a lot of people and they were very responsive.” and make life that much easier for multitudes.”

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the last word

Gratitude Beyond Words Through the Hair Massacure, this mom had heard how awesome the Stollery is, but now she knows first-hand

BY Josie starosta

I gave bIrth to Dysen Dean barber on November 8, 2014, at 7:50 p.m. He was six pounds, eight ounces and 21 inches long – our most precious little boy. After three days of being in the Provost Hospital, we got to take our little boy home. But this happy day was to be short-lived.

That evening, I knew something was wrong.

Dysen had not eaten very much and, though I didn’t know it at the time, he was having seizures. We took him back to Provost Hospital and we were admitted for the night, although there wasn’t much the hospital and staff could do for my little guy.

The morning of November 12, we were told that an air ambulance was coming to take Dysen to the

Proceeds from Hair Massacure support the granting of wishes through Make-AWish® Northern Alberta and pediatric oncology research through the Stollery Children’s Hospital Foundation.

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Stollery Children’s Hospital in Edmonton. I knew that would be the best place for him to be and that it was an amazing place, but it hurt so much to not know what was wrong with my little baby, who looked perfect.

The reason I knew the Stollery was such an amazing place is that, for years before, I had volunteered at the Hair Massacure – the annual head-shaving fundraiser held at West Edmonton Mall around Valentine’s Day – and had heard amazing stories about the Hospital and the caring staff. Our family got involved with the Hair Massacure 10 years ago, when we all dyed our hair pink and some of us shaved it all off. We have been involved ever since, volunteering in Red Deer, Edmonton and Calgary.

The nurses that came on the air ambulance helped Dysen so much! I was a nervous wreck by the time we arrived at the Stollery. There was a lovely, caring nurse there named Kathy – she not only took great care with the most important thing in my life at that moment, but she also took care of me. She asked about my postnatal care and how I was really feeling. She explained so many things: what was happening with my son, what all the machines were and how they were helping him. All of the staff members there were incredible; they were always patient and understanding.

After four days, Dysen finally stopped having seizures and was hopefully on the mend. After doing tests to make sure there was no lasting damage, we got to come home on November 21.

I am so very thankful for the people involved in events like the Hair Massacure that support the Stollery. At the Hospital, there are doctors and resources that aren’t available anywhere else. If it weren’t for the Stollery, I would not have my son Dysen. He is now a vibrant, energetic two-yearold boy whom I love dearly – and he even has a new brother, Denton, who thankfully hasn’t needed to go to the Stollery.

I’m so thankful to have a hospital, staff and resources like this in our province.

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Presented by

Thank you for supporting

Thank you for supporting our first-ever Wheels for Wellness car rally. This year’s event raised more than $192,000 in gross revenue, with 50 per cent of net funds for the Stollery Children’s Hospital and 50 per cent for the Mental Health Foundation.

Your support for the Mental Health Foundation funds early intervention programs for children and youth — programs that reduce the risk of depression, suicide, substance use problems and hospitalization. Early intervention programs also help with a quicker and more complete recovery for children and youth affected by mental health issues.

Your support for the Stollery goes to the Stollery Kids Direct Impact Fund — undesignated funds that are dedicated to meet the Hospital’s most urgent equipment, research, training and program needs. You are the difference when it comes to creating excellence at the Hospital and making sure the Stollery has what it needs to care for the sickest kids from across Western Canada.

Thank you again for your generosity. We look forward to seeing you at next year’s Wheels for Wellness rally!

Special thank you to our 2016 sponsors PRESENTING SPONSOR

CHECKPOINT SPONSOR

WELCOME SPONSOR

RALLY SPONSORS

GIFT-IN-KIND SPONSORS

AFTER-PARTY SPONSOR

Presenting Sponsor

Thank you for helping us celebrate the spirit of giving at our 20th Annual Snowflake Gala.

Your generous support helped raise more than $939,000 gross revenue to fund leading-edge training and educational programs for the remarkable staff at the Stollery Children’s Hospital.

Together, we are making our vision a reality; together, we are giving the sickest kids, anywhere in the world, the best chance to live a long and healthy life.

Gold Sponsors

The Garritty’s Mike, Robi, & Family

Dr. Ray Muzyka and Leona De Boer & The Blind Enthusiasm Group

Thank you again, and we look forward to celebrating with you at next year’s Snowflake Gala! *gross fundraising amount

#SnowflakeGala

Photography provided by Diane Ammann, Jackie Dawn, Jen McLeod, Julie Lush, Nicki Wohland, Patrick Wan and Riyaz Sharan