HEROES - Winter 2016

STORIES FROM THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION • WINTER 2016

Amazing MACY Six-year-old Camrose child isn’t letting health issues slow her down

MEET THE ROBOTS Dr. Kim Adams is helping kids learn to play using assistive technology

DYNAMIC DUO Hospital alumni and twins Cole and Serena Johnson are thriving at 19

GUT INSTINCT

PM 40012957

How a child life specialist in the GI, liver transplant and small bowel program makes Hospital visits better

PLUS:

FORMER STOLLERY KID JOSH HUI FLEXES HIS PHILANTHROPIC MUSCLES

THIS ISSUE OF HEROES IS GENEROUSLY SPONSORED BY YACHIMEC AUTO GROUP

Presented by

Thank you for supporting our kids by becoming a monthly donor!

With your generous support, our 17th Annual Corus Radiothon raised more than

$1.33 million

*

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

Thank you!

Special thanks to our 2016 Corus Radiothon sponsors and partners!

*gross fundraising total

Proudly supporting

contents WINTER 2016

Departments 5

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

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Stollery Family

CPR mannequins are no dummies when it comes to saving lives

26 MILESTONE A Camrose couple’s business has become a vehicle to raise money and awareness for the Stollery

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24 SCIENCE OF PLAY Dr. Kim Adams uses robotics to help children with disabilities

30 A HELPING HAND Stollery specialist Angela Mark supports families and children through some tough days and procedures

37 SEE THE BIG PICTURE Christine Westerlund leads effectively at the Stollery no matter what role she takes on

FOUNDATIONS OF LIFE

11 TECH FILES

20 IT’S COMPLICATED The Complex Pediatric Therapies Follow-Up Program improves the quality of life for young survivors after life-saving procedures

MOTIVATION THROUGH ACTION

28 WHY I DONATE Late family matriarch inspires her loved ones to give back with donations and Stollery service

Features 12 MIRACULOUS MERIT Children’s Miracle Network fundraising balloons have helped raise more than $3 million to benefit children’s health care, a dollar or two at a time

14 WORTH THE TREK Camrose’s Denham family is grateful to be only an hour from the Stollery

18 A GROWING CONCERN After spending much of their childhood as patients in the Stollery Children’s Hospital, these twins will celebrate their 20th birthday next summer

34 CORPORATE HERO The Edmonton Civic Employees Charitable Assistance Fund counts the Stollery Children’s Hospital Foundation among its longtime beneficiaries

36 VOLUNTEER HERO A longtime volunteer is motivated to help by the sick kids she supports – as well as her own kids

38 THE LAST WORD

32 SMELLS LIKE TEEN SPIRIT Young philanthropist and former Stollery kid turned a history of Hospital visits into a reason to support other children

14 ON THE COVER: Macy Denham has spent her six years in and out of the Stollery PHOTO: Darryl Propp STOLLERYKIDS.COM

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WINTER 2016 VOL 3 • No. 5 Stollery Children’s Hospital Foundation ASSOCIATE EDITOR: ALEESHA JEX PRESIDENT & CEO: MIKE HOUSE, MBA, CFRE Stollery Children’s Hospital Foundation BOARD OF TRUSTEES: CHAIR: T. MARSHALL SADD, Lloyd Sadd Insurance Brokers VICE CHAIR: RICHARD KIRBY, MBA, Felesky Flynn LLP LAURIE ANDERSON, CMA, WAM Developments RICHARD BALAN, RTA Holdings Ltd. KELLY BLACKETT, Canadian Western Bank JIM CALDWELL, The Brick Group JONATHAN CHIA, CA, Melcor Developments Ltd. DR. ALF CONRADI, Stollery Children’s Hospital LINDSAY DODD, MBA, Savvia Inc. DOUGLAS GOSS, Q.C., AOE, Bryan & Company LLP NOAH JONES, BA, CFP, CLU, Fairley Erker Advisory Group ROD MACKENZIE, P. ENG., Legato Resources Ltd. LEIGH-ANNE PALTER, MBA, Chestermere Utilities Inc. GORDON PANAS, CA, PCL Constructors Inc. STEPHEN PETASKY, LUXUS Group RYAN POMEROY, Pomeroy Lodging LP IAN W. REYNOLDS, Q.C., ICD.D, Bennett Jones LLP DR. WILLIAM J. SHARUN, ThirtyTwo Dental MICHEAL WEBB, MacLachlan and Mitchell Homes Inc. DR. GREG ZESCHUK, Blind Enthusiasm Group EX OFFICIO: DR. RICHARD FEDORAK, University of Alberta DR. SUSAN GILMOUR, University of Alberta and Stollery Children’s Hospital DR. CHRISTINE KYRIAKIDES, Stollery Children’s Hospital DR. DAVID MADOR, Alberta Health Services CHRISTINE WESTERLUND, Stollery Children’s Hospital VENTURE PUBLISHING INC. PUBLISHER: RUTH KELLY EDITOR: SHELLEY WILLIAMSON COPY CHIEF: KIM TANNAS ART DIRECTOR: CHARLES BURKE DESIGNER: ANDREW WEDMAN PRODUCTION MANAGER: BETTY FENIAK PRODUCTION TECHNICIANS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTION: KAREN REILLY CONTRIBUTING WRITERS: Robin Brunet, Sydnee Bryant, Debra Clark, Martin Dover, MIchelle Falk, Angie Fielden, Michelle Lindstrom, Shelley Newman, Seamus Smyth, Willow White CONTRIBUTING PHOTOGRAPHERS AND ILLUSTRATORS: Cooper + O’Hara, Jared Kelly, Sheldon Lemoine, Evan Montgomery, Darryl Propp, Riyaz Sharan, Nicki Wohland

SAVE THE DATE November 5, 2016 Proudly Supporting

ABOUT THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION The Stollery Children’s Hospital Foundation funds excellence at the Stollery Children’s Hospital. Excellence comes in many forms: specialized equipment; sub-specialty education to train the brightest medical minds; research to discover new treatments and cures; and specialized pediatric programs that improve family centred care, and patient and family outcomes.

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

HEROES is published for the Stollery Children’s Hospital Foundation by Venture Publishing Inc., 10259-105 Street, Edmonton, AB T5J 1E3 Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276 circulation@venturepublishing.ca Printed in Canada by Burke Group of Companies Limited.

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

FOUNDATION message

Motivation Through Action

PHOTO: RIYAZ SHARAN

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

THERE’S AN OLD SAYING THAT GOES, “Children learn what they live.” I like this thought because it emphasizes the importance of leading by example. Whether you’re a parent, a grandparent, an employer, a health-care professional or a community volunteer, you can never underestimate the power of leading through doing.

In this issue of Heroes, you’ll read many stories of how leaders in our community of all ages and experience are carving a path for others to follow. From the touching to the technological, people are tapping into their passions and professions as a way to inspire others to explore their potential to grow and give, all of it directly benefiting the health of kids in communities across Western Canada.

The Denham family is a wonderful example.

Cliff and Brenda Denham, who own a Ford dealership in Camrose, have been supporters of the Stollery and of our Foundation for more than 12 years, encouraging others in Camrose and the surrounding Battle River area to give. They educate their neighbours on the impact of the Stollery in their region as part of a community initiative that’s raising money for operating room expansion at the Hospital (see “In Good Company” on page 26).

The positive affect of the Denhams’ leadership

STOLLERYKIDS.COM

can also be seen through the actions of their employees. The dealership’s workforce raises money each year in memory of Cliff and Brenda’s granddaughter Keiryn who was born six years ago and sadly passed away at the Stollery due to complications. Keiryn’s twin sister, Macy, continues to receive cardiac care at the Stollery (See “Worth the Trek” on page 14).

This deep community connection to the family and to the Hospital is truly touching as it inspires others around them to help where they can.

Volunteers have a special ability to motivate through action. Take Ingrid Rose, a longtime volunteer with the Foundation, who is a welcome and familiar face at many of our annual events.

Our donors and volunteers often comment that Ingrid’s gentle nature inspires them to do more.

Ingrid, profiled as this issue’s Volunteer Hero on page 36, says, “If my example inspires people to give of their own time, then I’m all for it.” Thanks for the inspiration, Ingrid!

There are people who are hardwired to lead by example. And then there are those who are using hardwired technology to make some major strides in children’s health.

Dr. Kim Adams is an electrical engineer and assistant professor with the Faculty of Rehabilitation Medicine at the University of Alberta whose use of robot technology is helping

children with severe disabilities. Her success in demonstrating the positive effects of interactive play in rehabilitation has lead to a two-year innovations grant from the Foundation through the Women and Children’s Health Research Institute. Dr. Adams is this issue’s One to Watch (see “Science of Play” on page 24) and, if she presses all the right buttons, her research is expected to have huge benefits on the use of adaptive technologies in pediatric care.

Simulation technology is leading the way at the Stollery. For clinical nurse educator Amy Davidson, high-tech, high-test CPR mannequins are a crucial piece of her educational arsenal (see “Playing for Keeps” on page 11). Dozens of registered nurses at the Stollery attend her monthly CPR training courses to improve their skills and confidence heading into real-life scenarios. With the Foundation’s help, the Hospital plans to purchase several new mannequins for training of more pediatric intensive care specialists, doctors and respiratory therapists.

It’s not only the world-class health care experts within the walls of the Stollery who are leading by example, but also the Hospital’s brave young patients. Stollery-kid-turned-youthphilanthropist, Josh Hui, is a perfect example.

Josh has been in and out of the Stollery since he was two. Now 16, Josh shares his story of perseverance with our donors and the media and has raised close to $90,000 to help our Foundation buy much-needed equipment for the Stollery. He is also a leader on our Stollery Youth Philanthropy Committee, encouraging other kids his age to get active, give back and make a difference in their community. I encourage you to check out his story: “Smells Like Teen Spirit” on page 32, to learn more about this impressive young man.

As people, we tend to mirror what we admire.

Everyone featured in the pages of Heroes is worth our admiration. Thank you for continuing to support our Foundation and the Stollery Children’s Hospital, and for leading others through your acts of generosity.

Enjoy our winter issue and have a happy and healthy 2016.

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foundations OF LIFE

Body Art From the Heart WHEN LUCAS AND JAYME FORD’S SON HUDSON WAS BORN Project raised more than $23,000. In June 2015, the event raised with hypoplastic left heart syndrome, a condition in which the left side of $30,000. That’s more than $50,000 for the Stollery in total. his heart was underdeveloped, the family spent a lot of time at the Stollery.

Jayme credits the outstanding results of the fundraiser to her Two weeks after his birth, Hudson underwent his first heart surgery and community’s giving nature: “When people see shops doing something he received his second four months later. Now three years old, Hudson like this, they want to help. We go on the radio, we’re in the paper. The will have to have a third surgery, but not until he’s five or six. “While we community has been amazing.” This year’s upcoming event, slated for were [at the Stollery] we felt a sense of overwhelming need to give back June, promises to be just as exciting. Jayme has already been working because that Hospital is amazing,” says Jayme. “We decided to create with the downtown business association in Red Deer to brainstorm how a fundraiser using the avenues that we have,” she says, referring to her to make the event bigger and better this year. husband’s popular tattoo shop in Red Deer, Classic Tattoo.

The Hudson Heart Project has run for two years now and Jayme and Lucas are already planning this year’s fundraiser. In the past, they have rallied the support of tattoo artists from around the country. “They all come and work for 12 to 13 hours for free, donating their time,” says Jayme.

The tattoo community is tightly knit, and Jayme and Lucas’s friends are happy to help. Residents of Red Deer are eager to help too. People line up around the block waiting to get a tattoo and all proceeds from the day are donated to the Stollery Children’s Hospital Foundation. Along with the tattoo donations, a silent auction event is set RAISED FOR THE up. And, since Lucas also builds tattoo machines, he STOLLERY holds an auction for the artists as well.

In its inaugural 2014 fundraiser, the Hudson Heart

PHOTO: COURTESY LUCAS AND JAYME FORD

$53,000

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Love in an Elevator KEN AND RICHELLE MORRISON WERE PLANNING THEIR dream wedding and they decided they wanted to do something different for their special day in July 2015. Both were familiar with the Stollery through various work fundraisers. Ken works for RE/MAX and donates a portion of his commission to the Stollery Children’s Hospital Foundation, and Richelle helps plan Costco’s Stollery fundraisers each May. “It’s such a great charity in Edmonton and everyone knows about it,” says Ken. “What’s better than to give to kids?” So the couple began planning how to incorporate fundraising opportunities into their wedding.

First, they thought it would be a great idea to make a donation in lieu of handing out wedding favours for their guests. Small frames on each table let guests know that a donation had been made in their honour.

Ken and Richelle also decided they would have an open bar and ask for donations instead of drink payments. But they made sure to tip the waiters in advance. “We didn’t want them to feel like we were cutting them out of a tip,” says Ken with a laugh. And, instead of the classic clink-and-kiss tradition at weddings, where the guests tap their glasses in order to get the bride and groom to kiss, Ken and Richelle chose to have a putting green. “If you got a hole-in-one we would kiss,” says Ken, “and if you missed you had to make a donation to the Stollery.”

Guests loved the idea and donated money throughout the day.

It was during the couple’s photoshoot at Hotel MacDonald when an unplanned fundraising opportunity occurred. Hopping onto the elevator, Ken and Richelle found themselves riding with a small lost dog. Looking to find the owner of the lost pup, they got off the elevator only to find Steven Tyler frantically looking for his pet. The celebrity was delighted to be reunited with his dog and took a photo with the couple. “We ended up selling the pictures and the story to TMZ and donating that money to the Stollery,” says Ken. Ultimately, the Morrisons raised $3,000 at their wedding.

$3,000

PHOTO: SHARON LITCHFIELD PHOTOGRAPHY

RAISED FOR THE STOLLERY

STOLLERYKIDS.COM

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foundations OF LIFE

Monster Mania Catches On QUEEN ELIZABETH HIGH SCHOOL TEACHER JEANETTE Vandale is passionate about building community amongst Edmonton’s North Central Catchment Schools, a district of elementary, junior high and high schools in Edmonton. Along with Robin Richardson and other teachers in the catchment, Jeannette attempts to ease the transition of students moving schools. “We work together really hard within that catchment to build greater community,” says Jeanette. In 2015, they decided to try bringing the kids together with a massive fundraiser for the Stollery Children’s Hospital Foundation.

Rallying together 10 Edmonton schools including Calder, Dunluce,

Lauderdale, Mee Yah Noh, Northmount, Dickensfield and Killarney, the catchment held a massive fundraiser with events ranging from silent auctions to wake-a-thons.

The highlight of the fundraiser was a project called Monster Mania.

Children in kindergarten created a drawing of a monster. The project was then added to by Grade 4 students, then by junior-high students and so on. People in the community came in and purchased the collaborative artwork. On the day of the fundraiser, the kids of different ages and from different schools came together. “We had the kindergarten kids working with everyone and they could see that the junior high and high school students weren’t that bad,” says Jeanette, “and they went through the whole day doing activities at Queen Elizabeth [High School] and bonding.”

At the end of the day, the schools had raised $16,000 for the Stollery.

Jeanette is proud of the way the kids rallied together. “It just makes it easier for so many of them to have an idea when they go to a new school what that school is all about,” she says.

10 SCHOOLS,

$16,000

PHOTO: COURTESY NORTH CENTRAL CATCHMENT SCHOOLS

RAISED

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

PHOTO: COURTESY KIM ALLEN

ALMOST

$40,000

RAISED FOR THE STOLLERY

Mission Stollery: Possible RUSTY AND RAELENE HURL’S NEPHEW WAS BORN WITH A

MORE THAN

$16,000

Drift for the Kids

RAISED FOR THE STOLLERY

FOR THE SECOND YEAR EVERLASTING DRIFT AUTHORITY, a car drift team in Edmonton, donated their time and effort to show off their drifting abilities and raise money for the Stollery Children’s Hospital Foundation. Drifting involves driving cars at fast speeds while maneuvering sharp turns and angles. The group has now raised more than $16,000 and hopes to hold another Drift for the Kids event this year.

Jenn Brown and her brother, who is on the Everlasting Drift Authority team, were inspired to create the event when a child in their lives was in need of a heart transplant. “He was on the heart transplant list for the first year and a half of his life,” says Jenn. “He didn’t get a new heart but he regained enough heart function that his doctors removed him from the transplant list.” Jenn and her brother remain passionate about giving back to the Stollery by keeping the fundraising going. “It’s a lot of work,” says Jenn. “But it’s so worth it.”

Drift for the Kids is an all-day drifting competition with a car show and other activities for the kids. Kids who have received care at the Stollery are in charge of judging the event and choosing the winner of the drift competition. “They loved it. It’s awesome to see the smiles on their faces and see that they can forget they’re sick for the day and can just have fun,” says Jenn. She fondly remembers a boy from the Stollery who spent all day at the event and couldn’t stop smiling. “He loved it,” she says. “He didn’t even want to take a nap.”

PHOTO: SHELDON LEMOINE

PHOTO: COURTESY YOUNG GUNS PAINTBALL

heart condition that required him to spend much of the first part of his life at the Stollery. The couple own a company called R&R Events and decided to use the business as a platform to plan a fundraiser at Young Guns Paintball in Stony Plain. “We just figured it would be a fun way to give back,” says Rusty. They’ve now held three annual events and raised almost $40,000 over the years.

The fundraiser is called Young Gun’s Paintball Mission: Stollery and anyone wanting to play must rally a team of five people. While a normal paintball game costs more than $70 per person, tickets for Mission Stollery are $50. This price saves players some money, but each must raise a minimum of $100 for donation as well. What follows is a massive round-robin game of paintball. A barbecue breaks up the day and in the evening a prize banquet takes place at The Beer Hunter in Spruce Grove. “So we have prizes for top fundraiser,” Rusty explains. “First place in the tournament, second place in the tournament, and then we also have our most colourful prize, basically for last place, for whoever got shot at the most.” Accompanying the feast is a 50/50 fundraiser and silent auction. Last year’s event raised $14,200.

The event is likely to continue for years to come. “We will be back at it next year,” says Rusty. Those interested in participating in Mission Stollery in 2016 can call R&R Events for details at 780-761-2404 or check out the group’s Facebook page, Mission Stollery.

STOLLERYKIDS.COM

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

HETLINGER TAEKWON-DO INVITATIONAL DATE: March 19, 2016 LOCATION: Wetaskiwin, Alberta Hetlinger Taekwon-Do School is hosting its annual tournament at Clear Vista School in Wetaskiwin. The tournament is open to Unified Taekwon-Do International Members throughout Alberta and Saskatchewan with an average of 170 competitors. Proceeds from the concession stand and a raffle will be donated to the Stollery Children’s Hospital Foundation. Visit hetlingertkd.com for more information.

14TH ANNUAL HAIR MASSACURE DATE: February 24, 2016 LOCATION: Mayfield Toyota Ice Palace at West Edmonton Mall, 8882 170 Street, Edmonton Hair Massacure kicked off in January with many participants colouring their hair pink. The campaign culminates with a massive head-shaving and hair-donating event held at the West Edmonton Mall Ice Palace on February 24. Last year, this event raised $1.2 million for Make-A-Wish® Northern Alberta and the Stollery Children’s Hospital Foundation. For more information or to register, visit hairmassacure.com

HAIR MASSACURE FORT MCMURRAY DATE: March 2, 2016 LOCATION: Peter Pond Mall, Fort McMurray, Alberta Join a team, pink your hair, shave your head, donate your hair or volunteer. Whatever you choose, you’ll support children with lifethreatening illnesses through Make-A-Wish® Northern Alberta and the Stollery Children’s Hospital Foundation. Visit hairmassacure.com for more information.

HEART OF GLEE CONCERT DATE: March 17, 2016, 7 - 9 p.m.

LOCATION: Myer Horowitz Theatre, 8900 114 Street, Edmonton Edmonton Catholic Schools will host the sixth annual Heart of Glee Concert in support of the Stollery Children’s Hospital Foundation. Junior high and high school students from across Edmonton will showcase their song and dance talents. For more information or to purchase tickets, please contact Danielle Weran at 780-989-3048 or Danielle.Weran@ ecsd.net

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WFG HOCKEY CLASSIC DATE: April 23, 2016 LOCATION: Mayfield Toyota Ice Palace, West Edmonton Mall and River Cree Resort & Casino World Financial Group will be playing a hockey game at WEM with a reception, silent auction and entertainment afterwards at the River Cree casino. Tickets are $100 or $20 for kids. Contact Jarek at jarek.chin@ gmail.com or 780-281-1881 for tickets or information.

2016 SPORT CHEK MOTHER’S DAY RUN, WALK & RIDE DATE: May 8, 2016 TIME: 8:45 - 11 a.m.

LOCATION: William Hawrelak Park, 9930 Groat Road, Edmonton Register your team for the 21st Annual Sport Chek Mother’s Day Run, Walk & Ride – Alberta’s largest family fundraising event. This year, donations to the Sport Chek Mother’s Day Run, Walk & Ride will help to purchase the Zeiss OPMI IFC operating microscope, at a cost of $100,000. Pediatric surgeons at the Stollery Children’s Hospital need this specialized microscope for microsurgeries including ear, nose and throat procedures. It magnifies the operative field of the middle ear or the throat, while projecting images onto a video screen for the medical team to observe in real time. To register or pledge a participant, please visit mdrunwalkride.com

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

by December 31, 2016.

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

BY Debra Clark

tech FILES

Playing for Keeps CPR mannequins are no dummies when it comes to saving lives

features and rigid plastic hair might seem like child’s play, but the time health-care professionals and families at the Stollery Children’s Hospital spend “playing” with these specially designed mannequins could one day save a life.

Cardiopulmonary resuscitation, better known as CPR, is one of the most important and universally practised first aid techniques. It’s generally used if someone is not breathing properly or if their heart has stopped – chest compressions and rescue breaths help keep blood and oxygen circulating in the body. And one of the most effective tools to help people master these vital skills is the CPR mannequin. While one of the first models, known as “Resusci Anne” or “CPR Annie” was introduced in 1960, subsequent decades produced even more lifelike and sophisticated replicas, adding men, children and babies to the family. However, in today’s high-tech world, even the most basic patient proxy is no “dummy” when it comes to providing the necessary training and education.

For Amy Davidson, a clinical nurse educator at the Stollery Children’s Hospital, CPR mannequins are a crucial piece of equipment. “The goal is that all of our nurses feel more comfortable dealing with emergency situations involving children and have the opportunities to practise before they might be faced with a real-life crisis – it helps with a nurse’s confidence,” she says.

Currently faced with a small stock of aging mannequins, Amy was thrilled to learn the Stollery Children’s Hospital Foundation would be purchasing a significant number of new mannequins. “As a group we share 12 adult and four baby [mannequins] with the pediatric intensive care unit. There are doctors and respiratory therapists that use these too, so between all of us, it’s difficult to share,” she explains. “It will certainly make things a lot easier for us – plus they’ll be in better working condition than our current ones.”

The Stollery has opted to purchase four Prestan Family Packs of mannequins. The kits, which will include eight adult/teen, four child and eight infant mannequins, will soon be available to staff at the Stollery, enabling them to be as prepared as possible when dealing with critically ill children. “They are both CPR mannequins … one is for child and adult CPR and the other for infant CPR. Even though we consider them STOLLERYKIDS.COM

PHOTO: PRESTAN PRODUCTS

AT FIRST GLANCE, A LIMP DOLL WITH NO

TINY HELPER: The Stollery will soon add four Prestan Family Packs mannequins to its roster to help staff teach families vital CPR skills. to be fairly low fidelity (i.e. plastic) dolls, this equipment is essential,” Davidson says.

“Nurses can effectively do compressions as well as effectively bag to inflate the lungs, that sort of thing … it helps them become more comfortable.”

CPR mannequins take centre stage in Amy’s Pediatric Emergency Assessment Recognition and Stabilization (PEARS) course, which is offered at least once a month to RNs and LPNs. “This class is part of our orientation, so it’s something all new nurses to inpatient units at the Stollery will go through. We do CPR testing and practise emergency scenarios in the comfort of a classroom setting … occasionally, classes are opened up to existing staff,” she explains. “Nurses certainly come to us with current CPR skills, something they have practised many times prior, but within this course we’re focusing on emergency recognition and how to deal with stabilizing these “Nurses can effectively do children – it allows nurses compressions as well as effectively to put it all together.” bag to inflate the lungs, … it helps Amy also teaches CPR to families whose children them become more comfortable,” are in the Stollery and says Amy Davidson. must learn the skill prior to taking their loved one home. “Having the extra mannequins will be great because as it is right now we only have enough for one per family. Often we have parents, siblings or grandparents coming, so it’s hard to practise when they have to pass [the doll] around.

This way, all family members can learn at the same time,” she says. “We’ve had families come back after having attended a course at the Hospital telling us that they, unfortunately, had to perform CPR on their child, but thanks to the training, they received a good outcome.”

The total cost of the mannequins purchased by the Foundation, an investment made possible thanks to funds raised at last year’s Snowflake Gala in December, is $2,200.

They are expected to arrive at the Hospital in early 2016.

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Miraculous Merit Children’s Miracle Network partners rely on their front-line staff and employee champions to help raise millions each year for the Stollery Children’s Hospital Foundation The Stollery Children’s Hospital Foundation is a proud member of Children’s Miracle Network (CMN), a non-profit organization dedicated to saving and improving the lives of kids by raising funds for 170 children’s hospitals – 13 of which are in Canada. The funds raised through CMN programs stay local and amount to 20 per cent of our Foundation’s annual donations.

Here are a few notable CMN corporate partners who, through employee giving and staff generated fundraisers, have drummed up $3.6 million in 2014-15 to help transform children’s health care.

Did you know that if you purchase a paper Miracle Balloon in northern Alberta it supports the Stollery Children’s Hospital Foundation? Many of our Children’s Miracle Network partners raise thousands one or two dollars at a time. Money raised in our community directly benefits our kids.

Since 1994 Miracle Treat Day Blizzard sales and in-store fundraising Next event: August 11, 2016

Since 2014 The Brickley Campaign Brickley Bears sales and in-store fundraisers Next event: September 2016 to February 2017

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Since 1994 Grassroots and in-store fundraising Next event: May 2016

Since 1992 Miracle Month of May Point of sale and grassroots fundraising Next event: May 2016

Since 1994 Branch fundraisers and customers’ automatic monthly donations Next event: June 2016

Since 1992 Miracle Home Program Miracle agents donate per transaction Next event: Year-round

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Express Employment Professionals First Student Funding Innovations GNC IHOP Lids Foundation Microsoft/Xbox Mike Weir Miracle Golf Drive for Kids P&G Canada Panda Express Restaurants Canada Partylite Scholastic Shaw Communications

Since 2013 Colonel Sanders Miracle Kids Day Percent of proceeds and in-store fundraising Next Event: September 2016

Since 2013 Raises funds through a 24-hour gaming marathon Next event: November 5, 2016

Since 2000 Listeners donate monthly pledges during two-day radio broadcast on CISN Country 103.9, 92.5 Fresh Radio, 630 CHED and iNews880 Next event: January 2017

STOLLERYKIDS.COM

Since 2008 Slices for Smiles Smile Pizza sales Next event: April and October 2016

Since 1994 Provides funding through grant requests in support of music therapy at the Stollery

Since 2001 Aquafina, Miracle Nights and Breakfast campaigns and grassroots events in 2015

Since 2011 Employee and branch activites giving campaigns donated to Children’s Miracle Network

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PHOTOS:

feature HERO

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

BY Lisa Catterall

Camrose’s Denham family is grateful to be only an hour from the Stollery

PHOTOS: DARRYL PROPP

M

ACY DENHAM GIGGLES AND BURIES HER FACE IN

her mother’s arm when the topic of her hospital visits comes up. She plays shy for only a moment before she looks up again.

“Where’s my baby book? Can I show?” Macy whispers to her mom.

When Macy runs off to her room to find the book, her mom, Nicole Denham, smiles. Sitting next to her, her husband Brett begins to explain the experience the family had nearly six years ago, when Macy was born.

“My expectations of having a baby were just that you have a baby, and then you go home. I had no idea that there was a NICU, or anything like that,” says Brett. “It was a big adjustment.”

At just 20 weeks of pregnancy, Nicole faced some unexpected health issues. In December 2009, she was rushed to St. Mary’s Hospital in Camrose, the family’s hometown, with ruptured membranes. It was her second pregnancy, and already it was shaping up to be nothing like her first.

Pregnant with twins, she knew it was still too early to give birth, but was relieved to hear that the babies still had a chance, as long as she could get to 24 weeks of pregnancy. She was placed on strict bedrest, and at the beginning of her 24th week, was rushed to Edmonton and admitted to the Royal Alex. For the next several days, she anxiously awaited the birth of her babies. It was a tense time, and the beginning of what would become a whirlwind of hospital stays, surgeries and hours spent passing the time in waiting rooms.

“When I was in Camrose, Brett could come every day to see me, our oldest daughter Reese could come, and I would have visitors more often. Once I went to Edmonton, I was there by myself for the most part. It was pretty scary,” says Nicole. “But it was just the way that everyone in the hospital talks to you, you can just tell that they’re really concerned, and they want the best for you.”

At 25 weeks and six days of pregnancy, Nicole gave birth to twins Macy and Kieryn. Weighing less than two pounds each, the twins STOLLERYKIDS.COM

were in a delicate situation. The couple lived moment to moment, unsure of what the future would hold for the newest additions to the family.

“We kind of knew what we were facing, but we were still hopeful,” says Nicole. “Just after they were born, we saw them in the NICU. We met with a lot of people over those few days, lots of specialists. Everyone explained everything the best that they could, and they were really good at making us feel comfortable.”

After 11 days of overwhelming emotions and constant changes, the couple faced their worst nightmare.

“We had to have some hard conversations, having to let go of Kieryn,” says Brett. “But everyone in the hospital was sensitive to that. There were times that Nicole was crying, they were crying. You can just tell, they were really concerned, and they truly wanted the best for us.”

“Macy, we were told, was a rockstar, and she was doing great,” says Nicole.

But after returning from Keiryn’s memorial, the Denhams faced a new set of challenges.

“We were told Macy was having some more issues again, and her oxygen levels were still not great. So we found out that she would need to have her PDA clipped,” says Nicole.

A PDA, or patent ductus arteriosus, is an open hole in the aorta that allows the blood to skip circulation to the lungs. For most fullterm babies, this hole closes, and blood circulates through the lungs, where it is oxygenated. In Macy’s case, this hole was still open, and surgery was required to close it.

The surgery was just the first of a number that Macy would face in her first year. She was hospitalized at the Stollery in Edmonton for the first five months of her life, and even underwent exploratory surgery so doctors at the Hospital would be better able to diagnose any problems and prevent any further issues from occurring.

“There was worry, frustration, joy – we felt so much in that first period,” says Brett. “It was really like a roller coaster, with her health W I N T E R 2 0 1 6 | HEROES

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MEMORIES: Macy loves carrying her baby book around the house and showing it to guests.

going up and down, and our emotions going up and down. But in the was also gagging and throwing up, which compounded the problem end, the care we received was really world-class. The doctors we had and made nutrition a major concern for the Denhams. were great.”

“Every two hours we’d try to feed her, but she was throwing up At one point, when Macy came down with necrotizing a lot,” says Nicole. “One day, she just refused to put anything in her enterocolitis, a condition common in premature babies where mouth. She was just gagging and screaming. So I called our pediatriintestinal cells become damaged and die off, Nicole wasn’t sure she cian, and she said ‘Yeah, you have to go back to the Stollery – I’ll set could take any more. it up for you.’”

“It was so hard. Macy would take Faced again with the stress “When we got there I was just blown two steps forward, and then eight of a sick newborn, Nicole and away,” says Nicole Denham. “It was an Brett packed a bag, and made the back,” says Nicole. emergency just for kids, and they took hour-long trek to the Stollery for She had been staying in Edmonton at a friend’s condo near the their first visit to the children’s us in to this room, our own private Hospital, while Brett made freemergency department. room, and they took care of us. I was quent trips from Camrose. It was “When we got there I was just so impressed.” a challenging time for the entire blown away,” says Nicole. “It was family, and though they strived to an emergency just for kids, and be strong the support offered in the Hospital was needed. they took us in to this room, our own private room, and they took “I went in, and I saw Macy connected to all of these tubes, and care of us. I was so impressed.”

I had just had it,” she says. “One of the nurses asked me if I was Since Macy wasn’t able to take any food orally, she had to have a okay, and I said yes. But she called Brett because she knew I wasn’t nasogastric (NG) tube inserted for feeding during this Hospital stay. actually okay.”

This required a major adjustment for the Denhams, and meant that Finally, after 145 days in the Stollery, Nicole was able to bring baby the family needed to learn about nutrition and feeding procedures Macy home to join the Denham family. Older sister Reese, then two, they hadn’t experienced before. Thanks to the breadth of support was excited to finally be a big sister. Unfortunately, Macy’s health available at the Stollery, Nicole learned how to take care of Macy’s wasn’t about to settle down just yet. sensitive nutritional needs.

As a result of her premature birth, and the medical complications “While we were there, they went through every test to see if there that followed, Macy didn’t develop the strength to feed from a bottle was something else wrong,” says Nicole. “After they determined the or swallow food naturally. Nutrition was always an issue, and even NG tube was what was needed, they showed me how to use it, how with the use of a Haberman bottle, designed for babies with cleft to insert it, and made sure that I was really comfortable with it for palates, her mouth was not strong enough to allow her to feed. She when I got home.”

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FULL HOUSE: The Denhams say they were brought closer as a family by Macy’s time at the Stollery.

Pictured are Macy, mom Nicole, baby sister Willa, dad Brett and big sister Reese.

And when she got home, things went smoothly for a while. That is, until Macy had the misfortune of catching a cold. While it might not have been a life-threatening issue for some, in Macy’s delicate situation it meant another hospitalization. Once again, the Denhams called their pediatrician, and were instructed to make the trek back to the Stollery.

“She did have a cold, but then while we were there we talked about having a fundoplication and having a permanent gastric tube put in,” says Nicole. “She was still throwing up, so the hope was to find a solution. They did a lot of tests and finally determined that was the best course to take.”

Fundoplication is a surgical procedure that aims to prevent the movement of stomach contents into the esophagus, therefore reducing the frequency of acid reflux or vomiting. For Macy, this would mean much easier access to nutrition. The permanent G-tube would take the place of her temporary nasogastric tube, and would allow her to feed without triggering her sensitive gag reflex. The surgeries went ahead as planned, and after three more weeks in the Hospital, Macy was finally discharged. It was to be the last of her visits to the Stollery in her first year.

The Denhams still stay frequently in contact with the Stollery’s Home Nutrition team. Macy’s permanent G-tube means she must get meals in liquid form five times daily. While Nicole and Brett handle most of the feeding processes, Macy’s life as an active six-year-old means community supports have needed to be developed for her. She attends kindergarten Monday to Friday, so once a day, her teacher and teacher’s aide take care of her meals.

An occupational therapist also visits the school to help Macy with her feeding and assist her with adjusting to the day-to-day tasks of a six-year-old’s life at school. Through it all, the staff who work STOLLERYKIDS.COM

with Macy are able to access supports at the Stollery.

“There’s such open communication for everyone. Her teachers will be in touch with Home Nutrition at the Stollery, which is great, because then it means we don’t have to contact the Hospital as often, and the teachers can access the information they need,” says Nicole.

Macy has adapted well to being in school. She’s an active and rambunctious girl, full of energy. She has a curious mind, often asking “why?” and “what’s that?” without hesitation.

“She’s always been around kids, and she went to preschool for two years, so she’s very social and very easy to make friends with. She’s so full of joy, and so willing and eager to learn,” says Nicole.

Macy’s energy is undeniable. She proudly shows off her baby book, asking questions about each of the photos inside. When the final page is turned, she suddenly runs off in search of more interesting activities.

“She’s got a big sister to keep up to,” says Brett.

And keep up, she does. In fact, the two can be heard giggling from the next room while their baby sister, Willa, 2, climbs on to their dad’s lap. It’s a picturesque family scene – the love, joy and care present in the house is almost tangible. Though they’ve faced more than their fair share of adversity, the Denhams are a happy family, one that is stronger than ever. After everything they’ve been through, they are so thankful for everything they have, especially the care they were able to receive at the Stollery.

“We’ve had the best possible outcome with Macy because of the Stollery,” says Nicole.

Brett adds, “Simply put, the Stollery means everything to us.

Just everything.”

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alumni FILES

A Growing Concern

PHOTOS: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

ROLE MODELS: Nineteen-year-old twins Cole and Serena Johnson, shown here at a past Corus Radiothon, don’t let their health issues and disabilities get in the way of pursuing their broad interests, including higher education.

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Serena and Cole Johnson each weighed less than two pounds when they were born. After spending much of their childhood as patients in the Stollery Children’s Hospital, the twins will celebrate their 20th birthday this summer

BY Sydnee Bryant

O

N JUNE 20, 1996, KEVIN AND LEAH JOHNSON’S Cole, who gets his food from a gastrointestinal tube, continues twins were born prematurely, at 24 weeks old. to see a dietitian. He started eating toast with peanut butter and Serena weighed a mere one pound 10 ounces, while Nutella a few years ago. Occasionally, he’ll eat a grilled cheese her brother, Cole, clocked in at one pound two ounces. sandwich or a cheeseburger.

Their heads were the size of mandarin oranges. Serena was born Other than his limited diet, Cole’s life is similar to other stublind and with cerebral palsy, while Cole was given a five per dents. He attends classes and nets work experience on Tuesdays cent chance of living until his first birthday. and Thursdays. After school he does chores, watches TV, plays The twins, who spent the first months of their lives in the Stol- video games and with the family’s three dogs and numerous cats. lery Children’s Hospital, are now thriving, happy 19-year-olds.

The family often goes camping, and has explored Alberta, The family, including the twins’ older sister, Cassie, remains close. British Columbia, Saskatchewan and the Yukon in their RV. On But the path to life outside of the Hospital was not always easy. these trips, the twins quad, fish and spend time with their par“Every day was a struggle for the first six years, really,” says Kevin. ents. The only adjustment is ensuring Cole has the right medical Serena stayed in the Stollery for four months. Her doctors equipment. They also often go to Drumheller, where Cole and didn’t expect her to see, walk or talk. She had numerous eye Leah hike, and Kevin and Serena follow behind at a relaxed pace. surgeries as a baby, and can only see light. Despite predictions, “We’ve always been such a team together. If one of us goes, we Serena is a bright young woman who graduated from high school all go. We’re the four musketeers,” says Kevin. with honours and a scholarship, and loves camping, hiking, The Johnsons also love to visit attractions, including the quadding and animals.

Alberta Aviation Museum in Edmonton.

Cole, who was born with intestinal, stomach and lung probDuring one visit, Cole and Serena were offered a trip around lems, spent his first three years in and out of the Stollery, which the city. Serena was chosen to steer the plane. “It’s hard to became a second home. “It was phenomenal. Everything you hear describe – it’s something you can’t really put into words. But, on television and in commerit was neat that it was me that cials about the Stollery – that’s got picked, instead of some“We’ve always been such a team what they are like. And that’s body that could see. I thought together. If one of us goes, we all go. everyone from the custodians to I would be a passenger, not We’re the four musketeers,” the specialists. The nurses endflying the plane. I flew for 10 to says Kevin Johnson. ed up being aunties and uncles 15 minutes,” she says. Serena to Serena and Cole,” says Leah. received a Young Eagles certifiAfter graduating from Bev Facey Community High School in cate to document the experience. During another museum trip, Sherwood Park in June 2015, Serena is taking a year off. “I know the twins met Commander Chris Hadfield. “He took my cane I’m going to go to university, preferably to somewhere with and used it like it was the steering joystick,” says Serena. He also smaller classes, like Grant MacEwan,” says Serena. She reads gave both Serena and Cole a mission patch from his jumpsuit, Braille books and uses special equipment to type and use her lap- something the twins will never forget. top. Her parents speak proudly of Serena’s accomplishments but The family travelled to Florida two years ago, a wish are happy she is taking a break. “Serena will take on the world,” Cole had granted by the Rainbow Society. They went on an says Kevin. “She used to study all night. She didn’t have much all-expenses-paid trip that included visits to Universal Studios, chance to see what the rest of the world was about. We hope one Disney World and Sea World. They stayed at Give Kids the World, day she’ll be able to run the world and make it a better place for a not-for-profit spot run by volunteers and geared for hosting us all to live.” wish recipients from The Rainbow Society and Make-A-Wish® Serena and Cole remain close siblings, although they have dif- Northern Alberta. The family met others in similar situations, ferent interests. “We’re still really close but we’ve kind of drifted something they also experienced at the Stollery. “We got to apart because I’ve grown up and he hasn’t so much, mentally. know other parents on the unit and you end up being a support His mental age is different than mine, so we can’t really relate to for them as much as they are for you,” says Leah. “You end up bonding with them because you have that in common – you have each other as easily,” explains Serena.

Cole, who has a developmental disability, is in the GOALS pro- a sick child. For us, doing the hospital thing was the norm. This is gram at Bev Facey. He graduated in June 2015, but was allowed what you’re given and you have to deal with it. This is your child to return for a final year. The GOALS program is a goal-oriented and you have to look after them.”

“A positive attitude goes a long way,” adds Kevin. “Giving up life skills program that teaches students things they can use in was never an option. You just adjust accordingly.” everyday life, such as how to calculate the GST for a purchase.

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feature HEROES

PHOTO: COOPER + O’HARA

It’s Complicated

GROUP EFFORT: The Complex Pediatric Therapies Follow-Up Program team includes the following members: Terry Nicholson-Knudson, Jill Tomlinson, Giovanna Girard, Wayne Biggs, Sharon Siu, Charlene Robertson, back; and Sandra Moore, Hope Valeriote, Gwen Alton, Jenny Wilson Gibbons, Victoria Micek, and Devin McFarlane, front. Missing are Janet Olsen and M. Florencia Ricci.

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The Complex Pediatric Therapies Follow-Up Program improves the quality of life for young survivors after life-saving procedures

BY Michelle Falk

F

OR NEW PARENTS WITH AN INFANT WHO HAS BEEN ILL,

there’s often a feeling of having overcome their child’s biggest hurdle – especially if invasive medical procedures were needed. But for survivors of life-saving therapies, it can be just the beginning: these infants are at risk of developing complications, such as neurodevelopmental sequelae, which can affect everything from motor and communication skills to learning abilities. The Complex Pediatric Therapies Follow-Up Program was started 20 years ago for just this reason – to support families with their child’s development and improve the quality of life for all involved.

Saige Werkman, now eight years old, is a past program participant. After having open-heart surgery, extracorporeal membrane oxygenation (ECMO) and a heart transplant all before her first birthday, her parents Gloria and Wes were simply worried about keeping their daughter alive. “You don’t really think of anything else,” they remember. Though she recovered physically, Saige will need speech support and occupational therapy long term, and will continue to have some learning difficulties compared to her peers. “I was not prepared for that. You just think they’ll get healthy,” says Gloria. “You don’t realize there are a lot of other things that come along with it.”

The program’s main purpose is to The program was envisioned by Dr. provide families Charlene Robertson, a developmental with developmental services should these pediatrician who has spent a lifetime be needed after ear- working in neonatal and pediatric ly therapies. Multidevelopmental follow-up. disciplinary clinics assess children to see if there are any concerns, and then implement strategies, offer programming, act as liaisons with the community and provide access to required services.

The program was envisioned by Dr. Charlene Robertson, a developmental pediatrician who has spent a lifetime working in neonatal and pediatric developmental follow-up. In the course of her work, she noticed high numbers of pediatric heart patients with developmental delays in early childhood. Wanting to help young patients and their families, Dr. Robertson joined Dr. Ivan Rebeyka, pediatric cardiac surgeon at the Stollery Children’s Hospital, to begin a pilot project in 1996. By 1999, Alberta Health and Wellness stepped in and provided a grant, allowing the Follow-Up Program to be launched in its full capacity. Co-ordinator Gwen Alton, an MN with experience in pediatric intensive care, also joined the team.

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PHOTO: JARED KELLY

FAMILY FOLLOW-UP: One of the families that has benefited from the Complex Pediatric Follow-Up Program is the Werkmans from Barrhead, Alberta. Patient Saige Werkman, centre, is flanked by her dad Wesley, sisters Hailey (second from left) and Sierra (second from right), and mom Gloria.

The Complex Pediatric Follow-Up Program’s research shows three years old, and early education for children ages three to six. that often life-saving therapies leave children with more than just The Follow-Up Program team ensures children are properly asphysical battle scars. Gwen explains that the prolonged illness and sessed before they start school, so the education system will be able hospitalizations these children undergo in early-life increases the to provide them with adequate supports if needed.

“There’s not another program like this in Canada,” says Gwen. likelihood of developmental, social and cognitive delays. “Some of these children have had open-heart surgery, but have also been on She and Dr. Robertson have carried the program for years, and pasECMO [heart-lung machine], and/or required a transplant. Some sionately believe in its necessity.

Since its launch, the initiative has helped more than 1,600 also have further complications such as infections or strokes that children and their families. In Edmonton, the team works out of are risk factors for learning delays,” says Gwen.

The Follow-Up Program is open to all young children in both the Stollery Children’s Hospital and the Glenrose Rehabilitation Hospital. Follow-Up ProWestern Canada who have grams are also run out of urban undergone major invasive “The sooner that we help children, locations throughout Western therapy such as: open-heart the greater potential to help alleviate Canada: the BC Children’s surgery, solid organ transplant secondary developmental problems. It’s Hospital (Vancouver), Alberta (heart, kidney, liver), and never too late, but they do much better Children’s Hospital (Calgary), ECMO in Alberta. Research Regina General Hospital, Kinsshows at least a 20 per cent the earlier that they have supports,” men Children’s Centre (Saslikelihood of these developing says Gwen Alton. katoon) and the Children’s delays.

Hospital in Winnipeg at existing “Many of these children are neonatal or developmental follow-up clinics. at risk for learning and functional disabilities,” explains Gwen.

Children may participate up until age five, but Gwen hopes The Follow-Up Program aims to intervene as early as possible.

Families are approached before they leave the Stollery Children’s funding will one day be available to keep kids in the program into adolescence, as there can be subtle cognitive delays that only begin Hospital.

“The sooner that we help children, the greater potential to help to present between ages eight and 12 years. This is partially caused alleviate secondary developmental problems. It’s never too late, because some of the children may have isolated deficits and if they but they do much better the earlier that they have supports,” says do not receive specific supports, “they end up doing okay in Grades Gwen. Children are assessed at six months after their treatment, 1, 2, and maybe 3 – but then as concepts get a little bit more diffithen again at 18 to 24 months, and then again at four to five years of cult, it gets harder for them.”

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supported and experience difficulty in completing assignments, the administration mode of a diuretic drug called Lasix (furosemide) organizing their work and being able to pay attention in class. in patients undergoing treatment for hypoplastic left heart synMandi Sauve echoes Gwen in her hopes for extending the age drome. As a result this procedure was changed. There has been little of participation. Her son Corie, now 12 years old, is a graduate hearing loss since. As mentioned previously, infections and strokes of the program but she feels he and her family would benefit have adverse developmental effects; the program’s research has from continued follow-up care. confirmed this, and hence “I wish we’re able to go longer the Stollery Children’s HosChildren may participate up until age with the kids, in their age limit, pital has renewed efforts to five, but Gwen hopes funding will one day reduce these complications because it is nice to continue the be available to keep kids in the program support,” she says. Corie was “These are examples of eviborn with hypoplastic left heart dence-based research that into adolescence, as there can be subtle syndrome and, as a result, had cognitive delays that only begin to present has translated into clinical four open-heart surgeries. He practice,” says Gwen. between ages eight and 12 years. is now doing well for the most In the past 20 years, the part, but still struggles with anxpartnership between the iety and is considered slightly delayed academically.

Complex Pediatric Therapies Follow-Up Program and the Stollery As part of the Follow-Up Program, participants agree to be has become essential to the ongoing care and monitoring of survivpart of an ongoing research study, which seeks to improve fuors of life-saving therapies. ture patient care and monitor effects of current practices. Their research has direct implications for pediatric intensive care practices at the Stollery, as well as improving parental counselUPPING THE ODDS: To improve health ling and validating the need for follow-up programs. outcomes for Stollery kids and their families, Research conducted between 2002 and 2007 found 28 per the Stollery Children’s Hospital Foundation cent of children with hypoplastic left heart syndrome experiinvests more than $3 million each year enced permanent sensorineural hearing loss, needing amplifito support innovative research backed by cation to hear. Working with nurses and pharmacists, the proevidence-based practice. gram’s researchers discovered that hearing loss was caused by

one TO WATCH

A LEGO UP: Kim Adams works with Troy Suela using the Lego Mindstorms Robot during a session at the Rehabilitation Robotics lab in the Edmonton Clinic.

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Professor and engineer Kim Adams uses robotics to help children with disabilities

PHOTO: EVAN MONTGOMERY

S

STOLLERYKIDS.COM

BY Shelley Newman

HE’S AN ELECTRICAL ENGINEER WITH A PHD IN

ed working with them about 10 years ago, Rehabilitation Science, and she’s putting it to good and it’s been amazing to explore what acuse. Dr. Kim Adams spends her days developing tech- tivities can be accomplished with this type nology that will allow children to play and participate – of robot.” children with physical disabilities, who would otherwise be As part of this exploration, one project confined to their wheelchairs and restricted to observing activ- Adams and her colleagues are currently ities from the sidelines. completing is the two-year Play and Prob“Watching isn’t the same as doing,” says Kim, an assistant lem Solving Project, which was funded by professor with the Faculty of Rehabilitation Medicine at the a two-year Innovations Grant worth more University of Alberta and a researcher for the I Can Centre for than $45,000 from the Stollery Children’s Assistive Technology at the Glenrose Rehabilitation Hospital. Hospital Foundation through the Women “Playing is such an important activity that helps children learn and Children’s Health Research Institute. about the world, and we’re trying to give children access to rich In this project, Kim is working with typexperiences through play,” she adds. ically developing three-to-seven-yearTo provide these experiential opportunities, Kim and her team old children to establish how they learn incorporate robot technology and they have seen incredible results to work with robots and what tasks they with it. “We often see younger children using the robots for func- can achieve. “The research will allow us tional play, such as building towers and knocking things over,” she to get a baseline for how typically develexplains. As children oping children use develop and learn ro“Playing is such an important activity robots at different botic skills, imaginative ages and stages,” that helps children learn about play is next. Kim recalls she explains. “This the world, and we’re trying to give working with one child will help us to enchildren access to rich experiences who developed an imhance the robots through play,” says Dr. Kim Adams. aginary zoo, with the to help children robot being the zoowith disabilities keeper that moved around the room, feeding and caring for the reach their fullest potential.” toy animals.

The skills children learn from ma“Playing allows children to be creative, and also to test theories nipulating robots often transfer to other and solve problems,” she says. “As children get older, robots can be areas, which can have lifelong positive used for interactive, academic purposes.” These scholastic appli- impacts. “When children control robots, cations may include everything from manipulating items for basic it builds so many skills that can be adaptmath concepts like adding and multiplying to making measure- ed to other technologies, such as power ments. When children are able to interact through robots, “they wheelchairs or specialized computer can demonstrate their knowledge, which helps teachers and programs,” Kim says. “Being able to use others to understand the student’s comprehension,” Kim says. even one switch allows children to access This type of assistive robotic technology is for children who multiple things.” have upper limb impairments resulting from cerebral palsy, spinal As Kim continues her work, she carries muscular atrophy or arthrogryposis, for example. Since the chil- the same passion she’s had for the past 25 dren may have a wide range of physical abilities, there has to be an years. “My whole career has been about equally wide range of options for interfaces, or controls, used to assistive technology, as I was a clinician manipulate the robot’s actions. for many years and then I received my “Depending on the individual’s ability, we may use one switch – PhD,” she says. “It’s so nice to now be or button – positioned beside a person’s head, for example,” Kim able to do research and look for a variety says. “Or head or eye movement can also be used to activate the of different ways to help people.” She robot.” If a person can access by touch, the interface can be the also highlights the importance of funders screen of a device such as an iPad. such as the Stollery Children’s Hospital While Kim works with multiple types of robots, depending on Foundation in research. “It’s wonderful her research projects, the Lego Mindstorms Robot™ is one of her the Foundation can give this kind of supmost frequently used devices for children. “These robots are so port,” she says. “It allows researchers to affordable, anyone can program them and many schools already discover and find new ways to save and have them,” she says. “Professor Emeritus Al Cook and I start- improve children’s lives.”

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milestone

In Good Company A Camrose couple’s business has become a vehicle to raise money and awareness for the Stollery

BY Michelle Falk

C

LIFF AND BRENDA DENHAM,

PHOTOS: COURTESY CLIFF DENHAM

owners of Lamb Ford Dealership and Tee Pee RV & Trade Centre in Camrose, are longtime donors to the Stollery Children’s Hospital. They have given personally and through their businesses since 2004. While the Denhams have always felt the Stollery was a worthy cause, the pair says their donations now come from a much more personal place since relying on the Hospital’s care in their own family.

The elder Denhams were thrilled to welcome two new granddaughters into their family when they found out their son Brett and his wife Nicole were expecting twin girls in 2009. Excitement soon turned to stress for the close-knit family, though, when Kieryn and Macy arrived much too early, at 25 weeks and six days. For the first 10 days, it seemed like the twins might be OK, but tragically at 11 days old baby Kieryn passed away. Macy’s health also took a turn for the worse at that time, to the point that the family feared they might lose her as well. But after three operations and 185 days in the Hospital over that first year, Macy pulled through.

“Obviously our son and daughter-inlaw spent numerous days at the Hospital with their daughter,” says Cliff. “They were totally impressed with how the Stollery Hospital did their job. Every time they had a question, the staff were right there to help out.” Cliff and Brenda pitched in during this time as well, making trips back and forth from Camrose and caring for Macy’s older sister Reese, who was two years old at the time.

Macy still has limited lung capacity and needs to be tube fed, but she has come a long way from her early months spent in the Stollery. She still struggles, but as far

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as her Grandpa Cliff is concerned, to see her today she is just like any other child. “She’s quite the little gal. She’s a little ball of fire, now. You’d hardly even know she’d had a problem,” he says.

Brenda agrees. “It has been about six years now and every time I see Macy I’m reminded of how blessed we are to have her in our family,” she says.

As a result of their time spent at the Stollery, the Denhams have become even more heartfelt supporters of the Stollery Children’s Hospital Foundation. They also encourage their employees, the people of Camrose and the Battle River area as a whole (which includes Camrose, Flagstaff County, Beaver County and surrounding communities) to support the facility that provides care for these municipalities’ residents.

Their granddaughter’s story touched the entire staff at both of the Denhams’ companies, the Tee Pee Trade & RV Centre and Trade Lamb Ford Sales car dealership. “When the situation happened with the Denham family, it really hit the dealership quite substantially,” says Pat Quinlan, general manager at Lamb Ford, where Brett Denham works as assistant general manager. “We really are a big family. We focus on having each other’s backs.”

Each Christmas since the twins were born, the dealership’s employees have given Cliff and Brenda a gift. The most meaningful thing they could think to give was a donation to the Stollery Children’s Hospital Foundation, “in remembrance of Kieryn and in honour of Macy,” Pat says, choking up. “Everybody gives a little bit more every year, it feels like,” says Pat. Last year, between the two dealerships, staff members donated $1,000 to the Foundation, a heartwarming gesture that is also a point of pride for Cliff and Brenda. “We’re very proud of our employees – we have a superstar team here,” Cliff says, adding this year the employees’ donation was doubled to $2,000.

Seeing how much help Macy got at the Stollery and how easily accessible the Hospital is from Camrose have been major driving factors for these grandparents wanting to raise further support.

“You can’t help but think you also want to help other children that are in distress,” Brenda says.

As a result of their time spent at the Stollery, the Denhams have become even more heartfelt supporters of the Stollery Children’s Hospital Foundation.

The Denhams’ extensive contacts in the Camrose area have also helped make it possible for them to be part of the Battle River Community Initiative. Cliff and his son Brett sit on the initiative’s committee, along with Rod Ross and Brian Austrom – all of whom have personal experience with the Hospital. The initiative is aiming to raise $500,000 for one of the new required children’s operating rooms at the Stollery. It’s about a third of the way toward reaching this goal with just over a year remaining in the campaign.

The Battle River Community Initiative kicked off last September with a wine and cheese fundraiser at the Rosses’ acreage. Darryl Sutter, head coach of the LA Kings, and Vikings, Alberta native was among the special guests in attendance along with his mother, Grace. The initial event was well attended and an encouraging STOLLERYKIDS.COM

KEEP ON TRUCKING: Cliff Denham, left, and his son Brett, are grateful for the excellent care available at the Stollery and have encouraged others to donate through the Foundation for years.

way to begin the project. “We are getting donations of anywhere from $50 to $50,000, so we’re starting out pretty good,” Cliff says.

To raise money, board members often go door-to-door, talking with people in the Battle River community and requesting donations in support of one of the new operating rooms. As he talks with his neighbours and fellow community members, Cliff is amazed at how many people in their area have depended on the care of the Stollery in their own families.

Brenda has found their philanthropic involvement unexpectedly therapeutic in dealing with the grief of losing a granddaughter. “It’s been a long time since I’ve actually sat down and thought about it,” she says. “You just kind of push it to the back of your mind – you don’t want to relive it.” While painful memories have been refreshed when she mentions it, Brenda has found talking about them has really helped her process the painful experience and move on.

HEALTH-CARE HUB: The Stollery is the only specialized pediatric health-care facility in central and northern Alberta. A hub for pediatric cardiac surgery and organ transplants, more than 40 per cent of patients live outside of Edmonton, hailing from as far away as British Columbia, the Yukon, the Northwest Territories, Nuvavut, Saskatchewan and Manitoba.

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PHOTOS: COURTESY OF JESSICA KRAMER

WHY I donate

Late family matriarch inspires her loved ones to give back with donations and careers in health care

R

OY MOSS ONCE OVERSAW 2,000 ACRES OF GRAIN FARM

in Fairview, Alberta. He is an Albertan in the classic sense: having lived here before Peace Bridges and Ice Districts. His story is one of incredible generosity, despite painful losses.

Married to Gail Moss for 53 years, they had four boys and two girls.

Gail died of breast cancer, but would leave behind an eternal legacy with the Stollery thanks to her and her loved ones.

One of their granddaughters, Jessica, now works at the Stollery Children’s Hospital as an RN. Three of Roy’s boys are no longer alive.

Bob passed away from pneumonia, Bill passed away in a rigging accident and Rod in a vehicle accident.

Despite such incomprehensible circumstances, Roy is matter-offact about the realities of life. “There is absolutely nothing you can do about death,” Roy says. “Every situation is different. You can’t advise somebody on something like that. I lost my mother when I was five years old. There is nothing that you can tell somebody. There

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BY Séamus Smyth

is no sugar coating in life.”

Gail was diagnosed with cancer three different times before passing away in August 2011. While receiving radiation treatment in Edmonton at the Cross Cancer Institute, Gail witnessed sick children coming to the hospital for treatment, and it encouraged her to donate and help as many children as possible.

“She was always so giving,” recalls Jessica. It was these lasting images of children yearning for a better life that inspired Gail and Roy, and then their daughter Bonnie and son Kelly, to all donate to the Stollery Children’s Hospital Foundation.

Jessica was particularly close with her grandmother, a connection that remains vivid to her to this day. “My grandmother was my best friend,” says Jessica.

Gail and Jessica had always joked about getting matching tattoos after Jessica had given her grandmother a wash-away tattoo as a playful joke in a special gift box. When Gail’s time was near the end, STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Jessica, her sister and mother were all inked on their inner forearms with matching breast cancer ribbons and the word “Believe” to symbolize Gail’s battle with cancer.

They decided to bring the stencil of the artwork for Gail at the hospital after her radiation treatment. Gail proudly donned the tattoo as well. It was then that a serious heart-to-heart ensued.

Jessica pursued a nursing career, and was motivated to help people, especially after watching the way Gail treated others.

“My grandmother was so selfless, always putting others before herself. She inspired me from a very young age to become a nurse,” she recalls.

Jessica attended school in Fairview before being accepted into Red Deer College’s Bachelor of Science in Nursing program. The school location was perfect, as it served as a less intimidating transition from a small town to a bigger city. The program was collaborative, with the University of Alberta allowing her to eventually find her way to the capital city.

“We had to target our entire practicum projects based on where we would want to work in the future. It was always my dream to work at the Stollery Children’s Hospital, so I focused my portfolio projects toward that direction,” says Jessica. When she applied for a position in pediatric oncology, the Stollery was impressed with her projects and her overall work, and she was granted a job interview immediately. “It was hard to believe I was offered a position at such a highly reputable hospital.

“I was so nervous, I was two hours early for the interview,” she says. Her punctuality, along with a number of her other impressive qualities, paid off, and she was offered a position.

She began working in the pediatric oncology unit on 4E3, where she would stay from June 2011 through January 2015 before applying for a position in the pediatric intensive care unit. She was offered a full-time PICU post, a challenge she continues to thrive on. “I was honoured and enthusiastic in accepting the position in PICU, because there is so much to learn in that setting – I felt like it was the next position for me to take in my nursing career,” she says.

With the new position came the opportunity to sit on the mentorship committee, an opportunity that she practically jumped at.

“I think the Stollery is an amazing hospital because it’s a teaching hospital. I have had so many amazing mentors that have positively influenced by nursing career since coming to the Stollery in 2011.

Nursing, like any other career, has its challenges, so I will always be eternally grateful for those who continued to motivate and encourage me along the way.

“Everyone is collaborating together for the good of the patient and their families,” she adds. “The Stollery encompasses family centred care, and I am privileged every single day to have the opportunity to be a part of those family’s lives.”

Roy was diagnosed with rectal cancer shortly after his wife’s diagnosis, but after surgery in 2008 he made a full recovery. He, along with his family, continues to make regular donations to the Stollery and the Fairview hospital, in Gail’s honour. Apart from monetary donations, Roy has purchased more comfortable chairs and towel warmers to provide comfort for patients.

“You don’t do it so someone can pat you on the back. You do it because you feel you have a reason to do it. You do it because you want to,” says Roy.

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MEET THE specialist

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Stollery child life specialist Angela Mark supports families and children through some tough days and procedures

BY Michelle Lindstrom

PHOTO: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

W

HAT DOES ONE OF THE BEST

jobs in the Stollery Children’s Hospital look like? Well, you can ask Angela Mark because she says she has one of them.

Angela is a child life specialist in the gastroenterology (GI), liver transplant and small bowel program, who works with children on unit 4C. She has done so for the past eight of the 10 years she’s been at the Stollery.

After completing a child and youth care degree at the University of Victoria, Angela received her Child Life Program certification, which focuses on the social and emotional needs of children, youth and families receiving treatment at the Hospital.

Her role, along with the 14 other child life specialists at the Stollery, is to help young patients cope better during their stay at the Hospital. “If they’re struggling with blood work, I’ll come in and give some strategies on how we can make it less traumatic for the child,” Angela says.

Her day’s tasks vary because she’ll get a patient list when she arrives, to indicate who’s there for the day. But she can also be called in for a consult, or to help a child with blood work, or explain a procedure to a family before the child’s surgery begins. Her department also runs the Hospital’s events around the holidays and on special occasions, like when players from the Edmonton Oilers visit.

But it’s the bedside support that many parents don’t realize her department is there for, and can help everyone in the family get through, she says.

Angela recalls one time when a doctor came into a girl’s room to explain a procedure she needed. Angela then asked the doctor to draw a picture to help explain it to her and her patient. “Nurses and doctors have their medical jargon and sometimes the kids get lost in understanding what’s going to happen to their own body,” she says. “My job is to help translate that to the kids.”

STOLLERYKIDS.COM

Child life specialists teach patients coping skills and support them, ultimately reducing time spent doing procedures. “It’s more efficient and frees up the nurse to go onto the next patient,” Angela says.

She knows first-hand the fear and confusion a child can have in a hospital, and wanted to change that experience for others.

“When I was young, I had a kidney disease and spent many years in and out of the hospital,” Angela says, adding that those combined good and bad experiences led to her future career choice.

She recalls parents not being allowed to stay overnight back when she was a patient, and that they could only come during visiting hours. “I remember the ladies coming in and doing play activities with us and having such a great time in the play rooms,” she says. “But I also remember being pinned down for blood work.”

A six-year-old girl who Angela has known for years frequently requests help during her blood work. She trusts Angela to support her with the various strategies the specialist has up her sleeve: a comfort hold with the patient sitting on her lap, distraction with toys or bubbles or giving a little bit of control back to “Nurses and doctors have their the patient. medical jargon and sometimes It’s not a patient’s choice the kids get lost in understanding to have blood work done, but what’s going to happen to their letting a child decide which arm to try first or the colour own body. My job is to help of the bandage being used translate that to the kids,” are small decisions that allow says Angela Mark. young patients to have some say in their care. “Those simple things help because their world is so out of control here in the Hospital, so just giving them those little bits of control really helps,” Angela says.

She commonly explains procedures to parents, but at other times will just listen to their concerns while they are still in the Hospital or over the phone once they’ve taken their child home from the Stollery. It can get overwhelming.

“I’m lucky, because I’ve worked with the program long enough that I get to see some of the kids as they grow up, because many GI kids start with us as babies,” she says. “I really get to build that long-term relationship with a lot of the families.”

Even though she’s doing what she calls her dream job, Angela admits bereavement support is a difficult part, as not all patients survive. Yet she feels honoured to be a part of the journey with those families who have to say goodbye to a loved one.

But the rewards, like helping out a six-year-old patient after Angela’s gained the young person’s trust, outweigh the challenges.

The Stollery Children’s Hospital Foundation is the biggest supporter of the Child Life Program, through its provision of both donated supplies and funds.

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youth PHILANTHROPY

Smells Like Teen Spirit Young philanthropist and former Stollery kid turned a history of Hospital visits into a reason to support other children

D

BY Martin Dover

R. SUSAN GILMOUR, ASSOCIATE PROFESSOR IN

year-old Josh was the one who called out to him. He held court pediatric gastroenterology at the Stollery Children’s as he asked Wayne all of these questions. He had no fear and now Hospital, has seen Josh Hui grow up. Since taking him he has grown into a philanthropic teenager and has done some on as her patient when he was only two years old, Dr. amazing things.”

Gilmour has observed Josh develop into a young ambassador Now in Grade 11, Josh likes to spend his time playing sports and and philanthropist for the Hospital itself. volunteering. “I was encouraged to give back by my family and “He understands what it is to be a patient, both as an in- I recognized that I was blessed to be in the position I was in,” he patient and outpatient, and he’s able to say it in an articulate, says. “Some other kids aren’t that lucky. I want to help so there succinct and meaningful way,” she says. “It’s a gift.” are more kids like me who get to be normal even though they’ve When he was only two months old, Josh was diagnosed with faced some tough circumstances.” biliary atresia, a rare and often fatal liver disorder. Some of the Whether he’s mixing Blizzards for Miracle Treat Day or sharing bile ducts in his liver were blocked and others were missing. his story at charity fundraisers, Josh thinks about the good work The toxic bile built up and caused scarring, which can lead to that those donations have contributed to over the years at the liver failure. Josh went on to have a high-risk surgery known Hospital. “What we do at DQ and other fundraisers inspires people as the Kasai procedure, which removed part of his bowel and to donate so that each year the event can continue to grow and beconnected it to his liver to act come more successful, which in like a large bile duct. Josh’s “He was such a dynamic little energizer turn helps more kids,” he says. parents, Don and Nora, had In addition to Miracle Treat bunny. He was so charismatic. been warned that their son Day, Josh has also successfully He came in and wowed our entire could still go into liver failure co-hosted the Stollery Chilnewsroom and won us all over,” says and need a transplant. dren’s Hospital Foundation’s CTV news anchor Erin Isfeld.

Thankfully he pulled Snowflake Gala with CTV through his surgery in B.C., Edmonton’s Daryl McIntyre and he has since received all of his follow-up care at the Stollery and former anchor Carrie Doll. He really enjoys speaking at events in Edmonton. Now 16 years old, Josh dedicates a lot of his spare like this one and others, such as charity golf tournaments. “I like time to philanthropic work that benefits the Hospital. being able to connect with people,” he says. “Some of them may “He’s always been a lovely, bright and engaging boy. Now not have heard what the Stollery has done, so it’s cool to share that he’s becoming a young man, his philanthropy and com- how I’ve been helped and give people hope. It’s a good feeling.” munity work is certainly something I’ve seen him grow into,” When he gives presentations, it’s hard to miss Josh’s positivity says Dr. Gilmour. “The community spirit and selflessness of his in the face of tough circumstances. “Even though being in the family have helped to foster and develop that in him.”

Hospital is a bad situation, you just kind of have to make the best of One of the causes that Josh is dedicated to is Dairy Queen’s it while you’re there,” he says. Josh fully expects to continue volMiracle Treat Day. Each August, he teams up with his parents, unteering for the Stollery as he gets older. “I’m hoping to actually sister Kaitlyn and friends, such as CTV news anchor Erin Isfeld, volunteer in the Hospital,” he says of his plans one day. “Instead of at his local Dairy Queen to raise money and awareness for the going out to other events and talking to people, actually working Stollery. “He just believes so strongly in it,” says Erin. “His par- in the Hospital with the kids is one thing I’ve considered.” ents are encouraging and supportive but he just has something Recently, Josh shared his story for a Stollery campaign that about him – and he knows how to give back to the community. brought in a record $86,000. The money from that fundraiser It’s his passion that drives him.” went towards much-needed equipment and services. “It really Erin met Josh when he was much younger – CTV welcomed helped me to understand and see where the funds were going and a young, budding reporter in the making to its studios to help how it could help improve the Hospital,” says Josh. “I realized cover the CN Canadian Women’s Open golf tournament in 2007. how great the need was when I was in the Hospital as some of As a Stollery kid, Josh was brought on board. In that role, he those machines actually helped me.” tagged along with sports reporters asking questions of the pro Erin believes that what sets Josh apart is his tenacity: “He female golfers. “He was such a dynamic little energizer bunny,” doesn’t take no for an answer but he does it in a way that’s not says Erin. “He was so charismatic. He came in and wowed our intrusive,” she says. “These are things that are really and truly entire newsroom and won us all over.” At the time, Wayne meaningful to his life ... I know that in the future he’ll do amazing Gretzky was in town for the tournament as well, and “seven- things and is a name you’ll continue to see.”

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STOLLERY CHILDREN’S HOSPITAL FOUNDATION

PHOTOS: COURTESY JOSH HUI

AMBASSADOR: Josh with Foundation employee Nicki Wohland, top. They were excited to participate in DQ’s Miracle Treat Day. Dr. Susan Gilmour with Josh and his sister Kaitlyn during a Hospital visit, bottom left.

Josh as a baby, bottom right.

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corporate HERO

Funding Families

BY Julie-Anne Cleyn

The Edmonton Civic Employees Charitable Assistance Fund counts the Stollery Children’s Hospital Foundation among its longtime beneficiaries

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B

RENDA WALUK, CHAIR AT THE EDMONTON CIVIC

Employees Charitable Assistance Fund (ECECAF), has learned a lot from tours of the neonatal intensive care unit at the Stollery Children’s Hospital. ECECAF allocates a significant amount of money to the Stollery Children’s Hospital Foundation. Brenda and her fellow board members have seen first-hand a need to expand on space and resources. “A family can’t even sit by the crib with their sick baby because there’s not enough room,” she says. “It is extremely crowded, and there’s no room; you can’t even put a chair next to the crib to hold your precious child. That’s how crowded it is there.”

In 2013, the Foundation announced a five-year, $15-million Critical for Care campaign to raise money to improve vital services and care spaces at the Hospital, including the addition of new and upgraded neonatal, pediatric and pediatric cardiovascular intensive care beds. This critical care redevelopment will alleviate the STOLLERY CHILDREN’S HOSPITAL FOUNDATION

overcrowding, insufficient space and reduced patient and family al attention they can, Brenda believes the Stollery is one of the privacy in the intensive care unit. Now, ECECAF has committed best-known places in North America that helps children. “It to a three-year donation of $500,000 for the unit expansion. didn’t even take a second thought for us to donate to the amazing More than 12,000 participating members from nine unions cause that the Stollery is. They do amazing work there. They have and associations, including the EFFU #209 City of Edmonton phenomenal doctors – the staff is incredible. It’s throughout our Management Association (CEMA), Edmonton Police Senior tours … [that] we’ve actually seen what a real, live day is at the Officers Association, IBEW #1007, CUPE Local #30, Unifor, UNA Stollery, and you can see how it touches the hearts of everybody.”

Local #196, AMNUA and ATU #569, make up the ECECAF. Union At the project’s announcement, then-health minister Fred members contribute one-quarter of a per cent of their salary to Horne aligned with Brenda’s beliefs about the Hospital, saying, the charitable assistance fund. Sixty per cent of all contribu- “[The] investment will make the Stollery one of the leading chiltions are allocated to the charitable portion of the fund, and the dren’s hospitals in North America.”

ECECAF Board of Trustees disECECAF will sponsor one of tributes funds to organizations the family rooms in the critic“It didn’t even take a second thought that are registered charities. al care units. The fund worked for us to donate to the amazing Every year, the charitable aswith the Foundation to find a sistance fund donates about $1.5 room that ECECAF could fully cause that the Stollery does. They million to organizations. equip and that could be named do amazing work there. They have ECECAF began providing after ECECAF. The family room phenomenal doctors – the staff is funds to the Foundation many will allow families and children incredible,” says ECECAF chair years ago. Three years ago, the to have a space for visiting and Brenda Waluk. organization funded a treatment special occasions. room in the pediatric emergency ECECAF has contributed department in addition to donating $25,000 to the Corus Radio- funding to many other organizations in the Edmonton region. Its thon, a two-day live broadcast of everyday life at the Hospital, members are truly committed to making a difference and believe during which dozens of young patients and their families tell their in impacting lives and promoting healthy communities.

Stollery stories.

When the province identified critical care expansion at the Stollery as a priority, it committed $55.3 million to upgrade the physical environment for neonatal and pediatric patients who need life-support and critical care, and to modernize the space for teaching and training. However, the Hospital needed an additional $15 million to meet the highest degree of excellence that these expansion projects require. Thanks to its generous donors, the Foundation has raised about 80 per cent of its $15-million Critical for Care campaign fundraising target.

The province said in 2013 that the new and upgraded critical care beds will give more infants and children access to world-class treatment, and young patients from Western Canada better access to heart surgery. The project will create 48 neonatal, pediatric and pediatric cardiovascular intensive care beds, and 16 single-patient rooms for each of the three units. The facility is slated to be completed in May 2020.

Brenda adds that children suffering from a variety of medical conditions will benefit from the critical care unit, including those who are receiving cancer treatment, have been in a severe accident, have had a serious diagnosis or have had a heart transplant. When the children leave the critical care unit, they typically are relocated to the regular ward, but with the upgraded facility, they will benefit from superior care than they would have on the ward. The critical care unit will also include a neonatal intensive care unit to improve the amount of space allocated to premature babies.

Brenda says that ECECAF chooses to support the Foundation to give kids a better quality of life because kids are our future. “If we can’t have healthy children, that’s our future at stake.”

In addition to wanting to ensure children get the best medicSTOLLERYKIDS.COM

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volunteer HERO

For the Children A longtime volunteer is motivated to help again and again by the sick kids she supports – as well as her own stay for the long haul, after the compulsion to give back is satisfied?

In child-related charities and causes, longtime volunteers are often motivated by paternal or maternal instincts. This is certainly the case for the Stollery Children’s Hospital Foundation’s Ingrid Rose.

Ingrid caught the volunteer bug more than a couple decades ago when she and her husband were living in Toronto. Now living in Edmonton, she was drawn to the Stollery Children’s Hospital after witnessing what she dubs “outstanding care and attention” given to her younger son William, who had been admitted to the Hospital in 2008 with a brain tumour.

“Being with children is just plain fun,” she adds about her motivation. “And getting to know the stories of their parents is extremely rewarding. For one thing, you gain an appreciation of not being alone in facing life’s challenges, that no matter how tough you think things are, there’s always someone who’s had it tougher – and prevailed.”

Ingrid has been a regular fixture at the Stollery since 2011, when her first activity was to help build the sets at the Foundation’s annual Snowflake Gala. “Even though I’m more physically inclined to do smaller jobs such as set painting, it’s fun to help create something that delights so many people,” she says.

Ingrid has since assumed diverse roles at the Foundation’s signature functions like Snowflake Gala. Recently, she took on a scheduled position helping stay in touch with monthly donors.

Colleagues at the Foundation invariably describe Ingrid as having a positive attitude and a willingness to learn and help out wherever she is needed: vital elements to any organization that cares for children who often have life-threatening health issues.

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MOTIVATED: Ingrid Rose says what has kept her volunteering with key Stollery Children’s Hospital Foundation events over the years is that one gains an appreciation for not being alone in life’s challenges, no matter how tough they are.

volunteers worry about, but Ingrid shakes her head. “No,” she replies without hesitation. “The devotion and compassion Stollery caregivers exhibit for every patient is tremendously uplifting and would fortify even the most vulnerable volunteer.”

Ingrid has benefited first-hand from world-class care at the Stollery. Her son William was diagnosed with a brain tumour when the family lived in Ontario. “Despite surgery, the tumour returned when we moved to Edmonton, and in 2008 he ended up at the Stollery,” she recalls. “After surgery and radiation, he was given a clean bill of health, and the only word I can think of to describe the care he received is ‘outstanding.’ ” William’s stay at the Stollery rekindled Ingrid’s compulsion to give back, which had first manifested itself when she was a legal secretary in Toronto. “I began volunteering for the Hospital for Sick Children (also known as Sick Kids), partly because I really liked kids,” she recalls. “Becoming a full-time mother took me away from volunteering, but after William’s experience I returned – and have relished every minute.”

Ingrid, who also volunteers weekly for Meals on Wheels (because she loves to drive around and meet people), says the Foundation is a particularly satisfying place to pitch in. “The people are so well organized and appreciative of your time that you feel privileged to be part of their group,” she says. “Plus, there are so many different things to do: apart from set building, one of my favourite roles is working with donors.”

Indeed, many donors have remarked that her gentle nature puts them at ease. In turn, her popularity has compelled the Foundation to give her an ever-increasing number of responsibilities. “One thing I’m not good at was working the office computers,” she says with a laugh. “I’m not exactly computer proficient.”

Not surprisingly, Ingrid is modest about her altruism and being recognized for her volunteer efforts. “It’s not appropriate, because I don’t do anywhere near what others do,” she says. “However, if my example inspires people to give of their own time, then I’m all for it.

“Volunteering gives you a tremendous sense of purpose,” she says. “And like all worthy endeavours, you’ll get far more out of it than you can imagine. And when you do it for something like the Stollery Children’s Hospital Foundation, you’ll literally enjoy every second.”

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

PHOTO: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

WHAT MOTIVATES VOLUNTEERS TO

HOSPITAL portrait

See the Big Picture Christine Westerlund leads effectively at the Stollery, no matter what role she takes on

BY Michelle Lindstrom

PHOTO: COURTESY STOLLERY CHILDREN’S HOSPITAL FOUNDATION

In November, Christine took on the acting senior operating officer role from her former colleague Tracy MacDonald, who retired from the Stollery. “In many ways when Tracy was in the role, I was basically her right-hand person, so the transition itself into this role has actually been very smooth,” Christine says of the temporary shift, from being director of site lead and Surgical and Operative Services Programs. She’ll remain in her acting post until a new candidate is hired, likely by late-spring. “I’m committed to the Stollery and the kids,” Christine says.

“It doesn’t matter the title that goes with it.”

“To go from working in a community atmosphere for 15 years, to coming to work in acute care, was actually quite scary but something I was excited to do,” says Christine Westerlund.

CHRISTINE WESTERLUND, ACTING SENIOR operating officer at the Stollery Children’s Hospital, was not always in an administrative role – she started in health care, working directly with patients as a nurse. “I did about two years of frontline nursing, providing immunizations to babies and teaching classes for new moms,” she says. “Then I went into a management role and worked in the community for about 15 years, in a variety of management and leadership roles.”

Christine began her career with the Stollery in September 2010 in a site lead position, and while her Hospital portfolios have changed a few times since, she has always held a director’s role. But what has not altered over the years, she says, is her motivation for being there: the children.

“To go from working in a community atmosphere for 15 years, to coming to work in acute care, was actually quite scary but something I was excited to do,” Christine says. “I felt that the transition over to the Stollery still really jived with my values of wanting to support families and I’ve always had a passion for kids, so it fits well.”

STOLLERYKIDS.COM

As a director, she oversees various program areas at the Stollery with a team of dedicated professionals reporting to her, who help run the programs on the ground level. “My role involves a lot of budgets and human resources focus at a higher level,” she says. “But it also includes exciting things, like helping to set the culture, policies, strategic direction for program areas, advocating for what we currently need to run our programs as well as where do we want to be in the future and what do we need to get there?” To do this, she pulls different teams together to look at the Hospital experience from a patient’s “journey perspective.”

“When you think of other companies, they go back to their customers right away to get feedback,” she says. “I just find that many times in health care, we actually don’t ground ourselves and chat with the customers.”

That’s why she’s quite proud of the Family Centred Care Council. The council is half made up of parents or former Stollery patients, now adults, and the other half drawn from staff members in all areas of the Hospital, such as physicians and frontline nurses. The group meets monthly to discuss family-centred care priorities, current policies and procedures and they also gather input from all members regarding such things as play area designs for patients, therapy options and even new operating rooms.

The Stollery Children’s Hospital Foundation is a vital financial supporter of strategic priorities, specialized equipment and capital projects Christine oversees. One is the pet therapy program, which is funded through the Foundation and was made possible with a private targeted donation.

“We have trained dogs that come in and spend time with the kids, like a work dog,” Christine says. “For one child who went through a procedure, we did not have to put him under a general anesthetic because the dog kept him very calm through the procedure so the child felt safe and did wonderfully.” She notes that the pet therapy also positively impacted the boy’s recovery, and is an example of the world-class care centred on both children and their families at the Hospital.

“I have a lot of pride in the Stollery and value the fact that we are still supporting the family,” Christine says. “In an ideal world, I would love for people to never have to come to the Stollery but if you have to come, I hope it’s the best experience you can have.”

W I N T E R 2 0 1 6 | HEROES

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THE LAST word

A Note of Thanks Now grown Stollery kid shares why she is inspired to give back and urge others to do the same

BY Angie Fielden

MY NAME IS ANGIE FIELDEN. I’M 27 YEARS old – and I have the kind, knowledgeable, amazing staff at the Stollery Children’s Hospital to thank for that. I was diagnosed with Guillian-Barre syndrome (a rare disorder in which your body’s immune system attacks your nerves) at just 18 months old and spent time at the Stollery when it was still just part of the University Hospital.

My miracle worker – the man who diagnosed and began treating me – was Dr. Lyle McGonigle.

I was too young to I am forever grateful for the staff remember the dewho supported and stood by my tails and feelings that surrounded me at the mom while she witnessed her time, but my mom, baby going through such troubles. Theresa, remembers her feelings like they were yesterday. I am forever grateful for the staff who supported and stood by my mom while she witnessed her baby going through such troubles.

My mom began volunteering for the Foundation in 2001 and opened the door to my own giving back. I have volunteered for the Stollery Children’s Hospital Foundation for about 13 years at a variety of annual events. I have been lucky to experience the fun and excitement at the Foundation’s Corus Radiothon, Snowflake Gala, Row for Kids, Tee Up For Tots and Gala in Blue Jeans, and I sit on the committee for the annual Mother’s Day Run, Walk &Ride. The Corus Radiothon (my favourite) is an amazing, unique experience because it’s an event

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HEROES | W I N T E R 2 0 1 6

where you truly get to see who the donations and time benefit. I feel fortunate to be able to meet some of the incredible children and their families on that special day. It’s truly amazing to see first-hand how important volunteers are for these events.

I genuinely believe the Stollery Children’s Hospital Foundation is an incredible organization that not only works to help the Hospital get what it needs to treat sick and injured children, but also creates an environment where families can feel safe and at home while battling some of the hardest moments of their lives. If you’ve ever had a family member, a friend or a loved one admitted to the Stollery, you know how important it is to support them. If you have never known anyone who has needed the Stollery, you are incredibly lucky and can rest easy with the knowledge that if that day ever comes, the best of the best will be there to guide and care for you.

With the recent arrival of my niece, I’ve felt my support for the Stollery grow more personal, meaningful and important. It’s hard to imagine while watching her grow that I could have been as sick as a baby as I was. I hope she never has to use the Stollery like I did, but knowing the Hospital is there is the reason I keep volunteering. There are several ways to help this wonderful foundation and I am so lucky to say I do by volunteering. It is a rewarding experience being able to give your time and effort to help others. It is the least I can do for the Stollery – they saved my life!

STOLLERY CHILDREN’S HOSPITAL FOUNDATION

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2015

Thank you to our amazing donors and supporters for making Snowflake Gala 2015 a huge success! Together, we raised more than $765,000 net to support leading-edge training for the remarkable staff at the Stollery Children's Hospital.

A special thanks to our sponsors Presented byfor all of their support.

2015

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

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