HEROES – Summer 2013

stories froM the stollery children’s hospital foundation • SUMMER 2013

Air

support Meet the doctor behind the hospital’s pediatric transport teaM

Family Forever

Puzzle Pieces A top researcher looks for answers to childhood obesity

The Stollery helps young adults to transition in their care

Plus: Bear Necessities ATB’s Teddy For A Toonie wraps up another successful campaign

hear froM the stollery’s original chaMpion child

T EE U P F OR T OTS Stollery Children’s

Hospital Foundation

2013 Presented by

$1,000,000 raised!!!

We are proud to report that this year’s Tee Up For Tots Golf Invitational raised just under $800,000.

However with the CN Miracle Match program, the net total is a little over $1 million for the Stollery Children’s Hospital Foundation!

Presenting Sponsor Committee Members: Noah Jones, Chair Marshall Sadd, Richard Balan, Cory Wosnack, Sean Montgomery, Richard Kirby, Steve Petasky, Brent Horn, Ashif Mawji, Alan Arnstein, and Nathan Isbister.

Golf Sponsor

Wheaton Family Foundation

Dinner Sponsor Glenn & Sandra Woolsey

Welcome Sponsor

Golf Pro Sponsor

Hole Sponsors

Champion Sponsors EDMONTON KENWORTH LTD.

Norma M. Gordon Investments

Lunch Sponsor

Cart Sponsor

Stollery Family Sponsor

Wine Sponsor

Photo Sponsor

Print Sponsor

N

True North

Holdings Inc.

contents SUMMER 2013

Stollery Family

Features

11 FUll CiRClE

14 aiR SUPPoRT

Theresa Fielden started volunteering for the Foundation more than 10 years ago. Now she wants to recruit others

20 PRoblEM SolvER There are many questions about genetic childhood obesity but one researcher and her team may be close to finding some answers

31 REigning ChaMPion Heroes checks in with the Stollery’s first ever Champion Child

33 a WoRld oF diFFEREnCE Hosanna Crowell wasn’t always as healthy as she is today. Her big brother Joe’s monthly donations to the Stollery are his way of saying thanks

Meet Dr. Allan de Caen, the medical director of the Stollery’s pediatric Transport Team that ensures kids receive optimum hospital care

17 long-TERM RElaTionShiPS Children get special care at the Stollery, but what happens when they graduate into the adult health care system?

33

22 a MaTTER oF liFE and bREaTh The tracheotomy is used to treat a range of respiratory disorders, but no matter the illness, the Stollery supports parents facing the challenges

37 ThE RighT MovE

Departments 5

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

6

Bobbi Spady didn’t always know if she would make a good nurse, but her recent CARNA award says otherwise

FoUndaTionS oF liFE Stand Up For Love; Marathon miracle worker; Birthday giveaway; Queen’s Diamond Jubilee recipient; Wedding day donations, and upcoming events

38 ThE laST WoRd

10 TECh FilES

Dr. Dominic Cave loves his job at the Stollery, but a rough day at the office isn’t easy to forget

This year’s Tee Up For Tots golf invitational and the Stollery’s ophthalmology department had their eyes on the same prize

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35 CoRPoRaTE hERo

22 26 bEhind ThE SCEnES The Stollery Children’s Hospital needs all hands on deck to reach its full potential. Meet the team at The Beach

Great Canadian Roofing has a great philanthropic attitude and the Foundation is lucky to be the company’s primary target

37

29 bEaR nECESSiTiES

▲ ON THE COVER: Dr. Allan de Caen and the Transport Team broaden the hospital’s reach PHOTO: Laughing Dog Photography S TO L L E RY K I D S. C O M

Every May, ATB’s Teddy For A Toonie campaign raises money for a specific cause at the Stollery. This year it’s the redevelopment of the hospital’s critical care units S U M M E R 2 0 1 3 | HEROES

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SUMMER 2013 VOL 1 • No. 2 StollERy ChildREn’S hoSpital FoUndation ASSOCIATE EDITOR: ALEESHA JEX

A whole new reason to support the future of children’s health care.

BOARD OF TRUSTEES ChAIR: ZAHRA SOMANI, B.Ed, MBA, Pirani Group VICE ChAIR: NASEEM BASHIR, Williams Engineering Canada Inc. RICHARD BALAN, RTA Holdings Ltd. VALERIE BERGER, ATCO Gas Ltd. HERBERT CHUI, SIF Asset Management Group Inc. KEVIN ERKER, Lakeside Roofing DOUGLAS GOSS, Q.C., Bryan & Company LLP ROD MACKENZIE, Legato Resources Ltd. ASHIF MAWJI DR. RAYMOND MUZYKA CATRIN OWEN, Calder Bateman Communications GORDON PANAS, PCL Constructors Inc. DR. WILLIAM J. SHARUN MARSHALL SADD, Lloyd Sadd Insurance Brokers MICHEAL WEBB, MacLachlan and Mitchell Homes Inc. EX OFFICIO: DR. WILLIAM COLE, University of Alberta and Stollery Children’s Hospital DR. SUSAN GILMOUR, University of Alberta and Stollery Children’s Hospital TRACY MACDONALD, Stollery Children’s Hospital DR. DAVID MADOR, Alberta Health Services DR. D. DOUGLAS MILLER, University of Alberta PRESIDEnT & CEO: MIKE HOUSE, MBA, CFRE, Stollery Children’s Hospital Foundation

Let us help you in planning a legacy in your will through the Stollery Children’s Hospital Foundation.

VEntURE pUBliShinG inC. PUBLIShER: RUTH KELLY ASSOCIATE PUBLIShER: JOYCE BYRNE DIRECTOR OF CUSTOM COnTEnT: MIFI PURVIS EDITOR: JORDAN WILKINS ART DIRECTOR: CHARLES BURKE ASSOCIATE ART DIRECTOR: ANDREA DEBOER ASSISTAnT ART DIRECTOR: COLIN SPENCE PRODUCTIOn MAnAGER: BETTY-LOU SMITH PRODUCTIOn TEChnICIAnS: BRENT FELZIEN, BRANDON HOOVER DISTRIBUTIOn: KAREN CRANE COnTRIBUTInG WRITERS: Deepti Babu, Colleen Biondi, Caleb Caswell, Caitlin Crawshaw, Alex Eldridge, Omar Mouallem, Tricia Radison, Scott Rollans, Robin Schroffel, Séamus Smyth, Debbie Waldman COnTRIBUTInG PhOTOGRAPhERS AnD ILLUSTRATORS: William Au, Ashley Champagne, Jason Everitt, Buffy Goodman, Laughing Dog, Mercer Photography, Nicole Noyce, Heff O’Reilly, Cindy Revell, Curtis Trent aBoUt thE StollERy ChildREn’S hoSpital FoUndation The Stollery Children’s Hospital Foundation is dedicated to raising funds for specialized equipment, sub-specialty medical education to train the best of the best, research to pave the way to the discovery of new treatments or cures for child health issues, and specialized programs that improve patient and family outcomes.Content may not be reprinted or reproduced without permission from the Stollery Children’s Hospital Foundation.

CALL 780.433.5437 www.stollerykids.com

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

FOUNDATION message

The Spirit of our Community

PHOTO: AllISON SMITH PHOTOGRAPHY

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

RIDE ALONG: Community events like Stephie’s Bike Tour are the heart and soul of the Stollery Children’s Hospital Foundation. This year’s event inspired Mike House, and he would like to thank Richard and Stephie Gagnon for their continued support.

MY GrAndMA usEd to sAY thAt it tAkEs a village to raise a child. But I think the same sentiment applies to our donors and the children they help throughout our community.

For example, because you care enough to give, Stephie receives the care she needs to treat her Juvenile Dermatomyositis, a rare autoimmune disease. Today, Stephie and her family say it’s important to give back to the Stollery by coordinating an annual fundraiser called Stephie’s Bike Tour for the Stollery Children’s Hospital Foundation. In May, I had the honour of participating in Stephie’s fundraiser, which raised more than $133,000 thanks to the support of many sponsors and participants, as well as a matched donation with the support of the CN Miracle Match campaign.

Support comes in all shapes and sizes too. I also had the great pleasure of attending the Spencer Berezowski Memorial Golf Tournament, which raised more than $63,000, and participating in Stollery Week with our radio partners at The Bear, Team 1260 and Virgin Radio, which raised more than $438,565. These funds were raised through the friends and suppliers of Great Canadian S TO L L E RY K I D S. C O M

Roofing, Siding and Windows. Roofers make sure that homes are protected – and they demonstrated that in a record breaking way this summer.

Support can be fun too, as our Foundation team found out by participating in Color Me Rad in July. This new event involved close to 18,000 runners and walkers being coated in coloured corn starch to raise more than $58,000.

These are just a few examples of the types of innovative community initiatives organized in support of the Stollery Children’s Hospital Foundation. In fact, there are more than 600 initiatives each year – big and small – that help the Foundation fund excellence at the Stollery. To us, excellence means a lot of things. It means providing world-class equipment, research and training programs.

It’s about attracting the best and brightest medical professionals to ensure the Stollery remains a Support comes in all shapes and superior health facility. sizes. Ten-year-old Stephie and her It also means providing family-centred care that family give back to the Stollery by coordinating an annual fundraiser. goes beyond diagnosis and treatment to supporting patients and their families at every step along the way of a child’s unique and complex medical journey.

It’s so wonderful to see our community come together throughout the year to create their own initiatives in support of sick and injured kids at the Stollery Children’s Hospital. Your time, talents and donations have a life-changing impact on patients and their families.

And even more, your Grandma would undoubtedly be proud, too.

An EvEnt nEAr You: We’ve included a sample of just some of the upcoming Stollery Children’s Hospital Foundation events on page 6 of this issue of Heroes.

But, this is just a taste of the many community events that take place throughout the year.

Visit stollerykids.com to see a full list of upcoming events or to find out how you can get involved.

S U M M E R 2 0 1 3 | HEROES

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foundations of life

Go the Distance Deunne Jacobsen’s first marathon presenteD great challenges and greater rewards. In an effort to raise money for the Stollery Children’s Hospital Foundation, the Grande Prairie mother of four collected pledges from friends, family and local businesses for her participation in the Maui Oceanfront Marathon during a family vacation to Hawaii last January.

The humidity and elevation changes of the race made it difficult. So did the jet lag from her flight two days prior. That, combined with the fact that Deunne had only ever run in an organized race once before, and never at a 26.2-mile distance, stacked the odds against her. But, in just under four hours and 10 minutes, with more than $6,500 raised for the Foundation, Deunne crossed the finish line with her family cheering her on. “It was definitely one of the craziest things I’ve ever done but also one of the most rewarding,” she recalls. “When I crossed the finish line it was amazing. It’s addicting too, I’ve ran a couple more since.”

Travelling has become an important part of Deunne’s life. Sometimes it’s a 12-hour flight to Hawaii so that her family can be worry free for a couple weeks, other times it’s a fourand-a-half-hour drive to the Stollery Children’s Hospital for treatment and monitoring. Deunne’s youngest son has Sturge-Weber syndrome, a rare congenital neurological and skin disorder, and requires frequent visits to the Hospital.

The Hospital is monitoring his condition, which requires Deunne and her son to spend time away from the rest of their family while at the hospital.

Despite the situation, Deunne can’t say enough good things about the hospital and its staff. “Everyone is just Grade A at the Stollery,” she says.

“It might sound weird to say, but we’re incredibly fortunate to live so close.

We’re lucky there are world-class doctors just a few hours away instead of having to fly with our son to Vancouver or Toronto for every treatment.”

With mixed feelings, Deunne recalls the time her son’s condition required surgery. She was worried, going through the ordeal without her husband who had to stay home with their other three children. But that didn’t mean she was completely alone. “I remember the neurosurgeon operating on my son came and checked on me probably five or six times. All of the nurses were really great that way too. I was absolutely blown away by how much they cared about not only my son, but me as well.”

So, when Deunne decided to start running competitively and was also looking for a way to give back to the hospital that did so much for her, she decided to fuse the two ideas. “It’s the least I could do,” she explains. “The Stollery has been fantastic to me and my family; I wanted to do anything I could to help the cause and say thanks.”

PHOTO PROVIDED By: DEUnnE JACOBSEn

Save the Date The Stollery Children’s Hospital Foundation is honoured to have caring people in the community creating events with proceeds supporting the Foundation and benefiting sick and injured children. We hope you will have an opportunity to enjoy or participate in these activities.

For more information, and a complete list of upcoming events, visit stollerykids.com.

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roW for kiDS Date: September 7, 2013

Merriott fitneSS event SerieS Devon turkey CHaSe

time: 8 a.m. to 5 p.m.

Date: October 14, 2013

Location: Telford Lake, Leduc, Alberta

Location: Devon Lions Campground, Devon, Alberta

Enjoy family activities, a BBQ and watch teams row their hearts out. www.rowforkids.com

The Devon Turkey Chase is being held with a goal in mind of keeping kids moving. www.turkeychase.merriottfitness.com

CurtiS HarGrove inCentive Half MaratHon

tiM HortonS’ SMile Cookie Week

Cotton Club

Date: August 17, 2013

Dates: September 23 to 29, 2013

time: 6 p.m.

time: 9 a.m. to 12 p.m.

Location: Cold Lake, Alberta

Location: Participating Tim Hortons locations

Location: Marriott at River Cree Resort & Casino

To register for the race or volunteer please visit the Running Room website: www.runningroom.com.

Purchase smile cookies for you and your friends and help spread smiles while supporting kids. www.timhortons.com

RE/MAX and Marriott Hotels & Resorts are proud to bring you the 5th annual Cotton Club Edmonton Gala. www.cottonclubedmonton.com

HEROES | S U M M E R 2 0 1 3

Date: October 26, 2013

S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

PHOTO: PAULA GIbSOn GRIFFITH

icing on the cake: Kayleigh Otterson wanted to thank the Stollery for saving her cousin’s life. When she came to the hospital to donate the $420 she collected in lieu of gifts for her eighth birthday, Dr. Domonic Cave wanted to thank her.

SurpriSe! When Kayleigh OttersOn made the trip to the Stollery Children’s Hospital with her family from Calgary, she wasn’t expecting to meet a real life hero. When Dr. Dominic Cave came to work that day, he didn’t plan on meeting one of the Foundation’s heroes either, but as fate would have it, Kayleigh and the doctor’s paths crossed, much to the delight of both parties.

Kayleigh was visiting the hospital to personally deliver the $420 she raised for the Foundation in lieu of gifts for her eighth birthday. A few years ago, her cousin Seth’s life was saved by the staff at the Stollery and she was looking for a way to say thank you. Kayleigh had just finished signing the giant cheque when she heard a voice: “Excuse me, may I interrupt to say thank you to this young lady as well?” It was Dr. Cave. The doctor spent some time with Kayleigh and explained his role at the hospital, treating some of the sickest children. Dr. Cave personally thanked Kayleigh for her contribution, which had a profound effect on Kayleigh and her family. “Everyone was absolutely amazed by this,” recalls Paula Griffith, community initiatives coordinator with the Foundation. “The family was over the moon by the impromptu meeting.”

To hear more from Dr. Cave, see The Last Word on page 38 of this issue.

Gifts of Love Lange’s life together was also a really good day for the Stollery Children’s Hospital Foundation. The two were married in Armena with a reception in Hay Lake on June 15, 2012, but instead of accepting traditional wedding gifts from their guests, the couple encouraged their friends and family to donate to one of three organizations, which included the Foundation.

And, it isn’t a wedding without a little wine, so the happy couple also made sure that all the money from the reception’s toonie bar went to the Foundation as well. “Ernie and I are both in our 50s and we both have our own homes so we really didn’t need or want any gifts,” Donna explains.

In total, Donna and Ernie’s special day raised $5,058.81 for the Foundation, quite a feat considering the ceremony had around 125 guests. “We all have sons, daughters, nieces, nephews and grandchildren who may be affected by illness at some point. The Stollery makes sure our children have the best health care possible.”

S TO L L E RY K I D S. C O M

PHOTO PROvIDED by: DOnnA AnD ERnIE LAnGE

One Of the best days Of dOnna and ernie

getting hitChed? Consider the Stollery Children’s Hospital Foundation for your wedding registry.

Call a member of our Community Initiatives Team at 780-433-5437 for further details.

S U M M E R 2 0 1 3 | HEROES

7

foundations of life

Queen’s Diamond Jubilee

PHOTO PROvIDED BY: TAMMY MACDONALD

like to congratulate recipients of The Queen Elizabeth II Diamond Jubilee Medal and thank them again for their philanthropic work. The medal commemorates the 60th anniversary of Queen Elizabeth II’s ascent to the throne, recognizing outstanding citizens and their significant contributions to their communities during her reign.

Heroes caught up with Tammy MacDonald, event organizer of the annual Hair Massacure, to ask her about her philanthropic efforts.

Why is the Stollery important to you?

The Stollery saves lives of children in northern Alberta; it’s that simple. We are lucky to have one of the best children’s hospitals in the entire country.

Can you explain your fundraising initiative?

Hair Massacure started at Canada Post in 2002. We invited friends, family and co-workers and raised about $32,000 by having participants shave their heads to fully appreciate a cancer patient’s hair loss. It’s almost doubled every year since then. By 2006 I took on the event full time and chose the Stollery Children’s Hospital Foundation, Make-A-Wish Northern Alberta and Ronald McDonald House as its benefactors, with a focus on the pediatric research and care. Hair Massacure has raised around $3.5 million for the Stollery Children’s Hospital Foundation, with $1.49 in 2013 alone.

What was it like receiving this great honour?

It shocked me. It’s a really prestigious award. We are just a family that wanted to help kids with life-threatening illnesses; we’re definitely not doing this to receive any awards or recognition. It’s an honour, but to me the biggest trophy is the labs that I know Hair Massacure is funding.

For more information on this amazing event, please visit hairmassacure.com

WINNERS: Tammy MacDonald poses with other medalists Bob Winterford and Len Hendrickson from Make-A-Wish Northern Alberta.

HEROES | S U M M E R 2 0 1 3

PIctuRE PERfEct: All proceeds from the Rock the Dress photo booth went directly to the Stollery Children’s Hospital Foundation.

Dressed For Success laST oCTober a minivan CraShed inTo a Grade 6 classroom in St. Paul, killing one student and injuring two others. Since that tragedy, the community has pulled together to support a variety of fundraising events and initiatives for the Pink Heart Campaign, which supports the three families most affected by the accident. One of the largest events came on February 9 at the Saint Paul Rec Centre and raised over $20,000 for the campaign and an additional $2,000 for the Stollery Children’s Hospital Foundation. The event, Rock the Dress, was a big success. “We had 350 tickets to sell and we sold every last one of them,” says gala organizer Lise DeMoissac. “It was amazing; everyone took to social media afterward and had a lot of positive feedback about the night.”

Rock the Dress had the theme of renewal. Attendees were encouraged to wear their old wedding dresses, graduation gowns and best Sunday suits while they danced the night away to a live performance from Alberta’s own rising country music star Brett Kissel. “A lot of women don’t ever think they’ll get a chance to wear their wedding dress again,” Lise says. “This gave them a reason. It was a very high class event that we don’t usually see in St. Paul, but when you consider our fundraising goals, it’s no surprise that everyone came out for support.”

In addition to ticket sales, Rock the Dress raised money through a live and silent auction as well as a photo booth for the guests. The photo booth earnings and cash from a 50/50 draw went to the Foundation. Lise says that when organizers were deciding where the money would go, it was a no-brainer. “The Stollery is just such a special hospital,” she explains. “The students injured that day were flown there immediately after the accident.

The Stollery is our main pediatric hospital.”

And, it looks like those old wedding dresses may get another spin on the dance floor next year as Lise anticipates turning Rock the Dress into an annual charitable event to raise money for a different cause each year. “It’s safe to say that there will be another Rock the Dress,” she says. “I know a lot of the guests are already looking forward to next year.”

S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

PHOTO: MERCER PHOTOgRAPHY

The STollery Children’S hoSpiTal foundaTion would

Photo: JoaNNa BEgg PattISoN

ONE LOVE: Much to the delight of Wendy Beaudoin and Dr. Jeff Pugh, arianne and Lindsay aguillon-Piojo decided to make the Stollery’s Pediatric Neurosurgery Fund the primary benefactor of their Stand Up For Love talent show.

Stand Up for the Stollery As twin sisters, AriAnne And LindsAy AguiLLon-Piojo obviously have a lot in common. Both are award-winning dancers who have performed around the globe. Both became registered nurses after university; arianne at the Stollery children’s hospital, Lindsay at the Fetal alcohol Syndrome Disorder assessment clinic at the glenrose Rehabilitation hospital.

Both were inspired by their time as volunteers at camp Everest, a summer camp for children with physical or mental challenges funded by the Stollery children’s hospital Foundation and run by staff from the hospital. and, together they were able to find a way to give back to the community. the end result is their annual Stand Up For Love talent show. this past april the sisters celebrated the event’s fourth year, raising $11,686.72 for the Pediatric Neurosurgery Fund (PNSF), which improves the lives and outcomes of children who have undergone brain or spinal surgery at the Stollery (camp Everest is funded by the PNSF). With a boost from the cN Miracle Match program, Stand Up For Love 2013’s grand total increased to more than $18,000. “this year’s event was awesome!” says arianne. “We are so overwhelmed with the amount of support we received. From the sponsors who donated prizes for the raffle draws, to the performers who donated their time and everyone else who bought tickets and came out, thank you for making this our biggest year yet.” arianne and Lindsay have seen their event grow since its inception, and each year the event garners more media attention and more support from the community. “our raffle prizes have definitely gotten a lot bigger over the years,” arianne jokes.

S TO L L E RY K I D S. C O M

after last april’s show, you may have seen people wearing Stand Up For Love t-shirts around town, or, you may have come across pictures from the event’s photo booth on Facebook and twitter. Despite the increased media attention, both arianne and Lindsay credit simple word of mouth for the event’s success.

“We often see that people who attended previous years will come back and bring their friends and family,” explains arianne. “I think that’s a good sign of how great an event Stand Up For Love is.” the same goes for the show’s performers. “We are both quite involved in the dance community and we’ve had the chance to meet a lot of people over the years who love performing at our event,” adds Lindsay. “a lot of the performers continue to come back every year. It’s getting to the point where we might have to start auditioning people.”

Stand Up For Love, which takes place at Ellerslie Road Baptist church every april, originally intended to support a different initiative each year, but the sisters since decided that the PNSF will be the primary beneficiary. they hope the continuity will help their event continue to gain support from the community. “Next year is our fifth anniversary so the plan is to do something special and make it our biggest show yet,” Lindsay says. “We’ve been blessed by the support so far, hopefully that continues next year.”

Are you stAnding yet? For more information or to get involved with Stand Up For Love, visit www.standupforlove.ca.

S U M M E R 2 0 1 3 | HEROES

9

tech files

BY Jordan Wilkins

Perfect Vision

PHoTo PRoVIDED By: ALBERTA HEALTH SERVICES

The success of this year’s Tee Up For Tots golf invitational means the Stollery will get a vital piece of optometry equipment

BRIGHT EYES: Dr. Carlos Solarte will soon be able to check the eyes of patients like Koel more conveniently now that the Stollery will have its own autorefractor.

Anyone who hAs eVeR hAd An eye exAm is fAmiliAR with An autorefractor, although maybe not by name. It’s the piece of equipment that patients typically rest their chin on and gaze into as the machine measures how light changes as it enters the patient’s eye. The autorefractor then determines what prescription is needed, if any, to correct the patient’s eyesight. It’s a standard piece of equipment for any optometry office but, unfortunately, the Stollery doesn’t have its own. Currently, the children’s hospital has to borrow an autorefractor from the Royal Alexandra Hospital and schedule appointments around the machine’s availability.

Brad Wakeman has been an orthoptist – a specialist who manages patients with eye muscle disorders – at the Stollery for the past 16 years, and he says it’s time that the pediatric ophthalmology department has its own autorefractor to keep up with demand.

“The autorefractor is a piece of equipment that is very high demand in our department,” he explains. “It’s in very high demand over at the Royal Alex as well; they’ve had to borrow it back from us a couple of times. It’s hard to operate like that, but the Royal Alex wouldn’t have it if it wasn’t needed over there, too.”

The autorefractor is an especially valuable machine when studying children’s eyes, Brad says, as generally his patients aren’t able to communicate about their eyesight the same way adults can. The old which-slide-looks-better test isn’t an option for a young child. Vision problems in young children are often signs of serious disorders, Brad explains, and the earlier they are detected, the better chance there is for treatment.

The ideal autorefractor for the Stollery is a compact model that’s portable and suited to looking at children’s eyes. This model doesn’t have the standard chin rest that others do and can take readings while children are asleep. But an autorefractor costs money. The machine generally goes for around $15,000 and, while that may be relatively inexpensive in comparison to other medical equipment, it will still cost the hospital a large chunk of change.

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HEROES | S U M M E R 2 0 1 3

But Noah Jones has a solution.

As the committee chair for this year’s Tee Up For Tots golf invitational, which took place at the Royal Mayfair Golf Club on June 24, Noah heard about the hospital’s need for an autorefractor and made it his mandate to raise as much money through the event as possible. Typically, the bulk of the tournament’s fundraising comes through title and various other sponsors (PCL Construction was this year’s title sponsor, sponsoring $100,000 for that honour) as well as live and silent auctions featuring donated items. This year, after consulting tournament players, Noah suggested that Tee Up For Tots go one step further and abstain from giving out the traditional gifts to the 140 golfers and instead allocate the money usually spent on these gifts where it’s needed the most: the Stollery.

In total, the 2013 Tee Up For Tots tournament raised just over $800,000 for the Stollery Children’s Hospital Foundation. And, thanks to the CN Miracle Match program, CN pitched in another $200,000, bringing the grand total to just over $1 million. More than enough for an autorefractor.

“We asked the Stollery what they needed and they told us how much an autorefractor would help,” explains Noah. “They have some excellent pediatric eye specialists working over there and I’m just glad that this tournament can continue to help out as it’s done for over a decade now.”

Noah, a partner with Sorrell Financial, has been on the Tee Up For Tots committee for the last two years and plans to remain onboard next year as well. Noah is no stranger to charitable efforts. No matter the organization or cause, Noah says there are two vital aspects he tries to enforce during any philanthropic cause, and the Tee Up For Tots golf tournament is no different. “My philosophy is that charitable events need to focus on two things,” he says. “The first is – obviously – to raise as much money for the charity as possible. The second is to generate awareness within the next generation of community leaders. It’s a huge mandate of mine to make sure that there will be someone to pass the torch to. I think the success of this year’s Tee Up For Tots shows that we’re on the right track.”

And, with a much-needed autorefractor on the way, it’s safe to say that Brad and the rest of the pediatric ophthalmology department would agree.

S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

BY séamus smyth

volunteer HERO

Full Circle

PHoTo PRovIdEd BY: AlBERTA HEAlTH SERvICES

A decade ago, Theresa Fielden started volunteering for the Foundation. Now she’s on the committee for the Gala in Blue Jeans event, thanking other volunteers and recruiting even more

Radioactive: Theresa Fielden (right) is a stronger person thanks to her time as a volunteer for the Stollery Children’s Hospital Foundation. She’s donated her time for dozens of events over the years, but both she and fellow volunteer Monika Ireland are particularly fond of the annual Stollery Corus Radiothon.

It’s tHE sEnsE Of HOpE In tHEIR EyEs. It’s the tiny paper clouds where kids pen their wishes hoping to one day see healthier times. It’s the hugs. It’s these sensations of unedited glimmer that have kept Theresa Fielden volunteering with the Stollery Children’s Hospital Foundation for over a decade.

For the Alberta Beach resident, volunteering embodies a sense of togetherness, a concept she says is fundamental to any functioning society. “It’s the whole idea of giving back. I think with volunteering in general, it gives you an example of living in a truly united world,” she says. “We all want to live united, but, in order to get there, everyone needs to do something for somebody else.”

Theresa’s daughter Angie was admitted to University of Alberta Hospital in 1989 with Guillain-Barré syndrome, a disorder affecting her peripheral nervous system. Although her stay predates the Stollery, according to Theresa, the support system in place for her and her daughter was in sync with today’s high standards and was nothing short of extraordinary. And yet it wasn’t just her family that seemed to receive special treatment, but every patient S TO L L E RY K I D S. C O M

and family throughout the ward. Although it’s never easy having a child in the hospital, Theresa says that the stay would have been a lot worse if it hadn’t been for the tremendous support given by the hospital’s staff. Her daughter recovered, and ignited a new level of gratitude in Theresa. She enlisted with the Stollery volunteer team in 2002 and continues her philanthropic efforts to this day.

Her incredible appreciation for the hospital has spread to many of her family members as well. She says that almost everyone in her family volunteers for the Foundation in one form or another. And her soon-to-be daughter-in-law is one of the Foundation’s special events coordinators.

Theresa attributes her daughter’s hospital stay and the time she’s spent volunteering as monumental experiences that have made her a stronger individual. “When a child is in trouble, you are obviously emotional,” she explains. “But later you learn how to be empathetic without falling apart, which is important for volunteers.” This trait has come in handy for Theresa over the years, as she’s witnessed some incredibly touching moments as a volunteer, especially during events like the Stollery Corus Radiothon.

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PHoTo: ALISTAIR HEnnInG

Fore Volunteers: Gala in Blue Jeans features a different theme ever year. Last year, volunteers and their families didn’t let their blue jeans interfere with their putting skills for the event’s mini-golf theme. This year’s Gala in Blue Jeans takes place at the Walter Mackenzie Health Science Centre on September 29.

“It’s really touching when you see the parents and their little ones walking by you; this is why we do what we do,” she explains. “You see first-hand how brave these little guys are. There is a lot we can all learn from a small child.”

Stacey Johnson, volunteer coordinator for the Stollery Children’s Hospital Foundation, also witnesses truly inspiring “I think that if we could just clone moments and people. From her Theresa, then we would be in viewpoint, the kids aren’t the only ones. Stacey says pretty good shape. We would inspirational she is surrounded by incredible have the best volunteer program volunteers at every event and she imaginable,” says Stacey Johnson. is thankful for people like Theresa who regularly donate their precious time. While Theresa cites her ability to stay strong and composed during emotional moments as one of her best traits, Stacey says that’s just a portion of what makes Theresa an ideal volunteer. “She is creative, energetic and unbelievably supportive to everybody,” says Stacey. “We are very lucky to have her.”

Theresa’s volunteer path has come full circle in recent years. She remembers being just a rookie, attending her first Gala in Blue Jeans, an annual Stollery event that thanks volunteers and also encourages new ones to join. This year, Theresa is a member of the event’s committee. The 2013 Gala in Blue Jeans will take place September 29 at the Walter Mackenzie Health Sciences Centre.

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Former Stollery patients will also be at the event as guest speakers, sharing their tales and reiterating the important role that volunteers like Theresa play in their recovery. In recent years, former patients spoke about the faith that volunteers instill in them and the hope that one day their health will improve.

Stacey, Theresa and the rest of the Gala in Blue Jeans committee are inviting every volunteer to come out to the event and to bring with them a friend who is interested in joining the team.

Stacey says that the Foundation’s volunteer program can accommodate all shapes, sizes and schedules as there are a variety of roles that need to be filled for the many events that take place every year. But, Stacey also has her own plan when it comes to strengthening the Foundation’s volunteer team. “I think that if we could just clone Theresa, then we would be in pretty good shape,” Stacey says. “We would have the best volunteer program imaginable.”

Lend A HAnd: Would you like to volunteer for the Foundation?

Contact Stacey Johnson, the Foundation’s volunteer coordinator, directly at 780-431-4606 or visit stollerykids.com/volunteer.

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18th Annual

ThAnk you

to all 2,100+ participants and all of the sponsors supporTing

www.mdrunandwalk.com prEsEnTing sponsors

sponsors

ThAnk you for helping Stollery Week and Stollery Day

raise $438,565!

Our friends and partners at 104-9 Virgin Radio, 100.3 The Bear and The Team 1260 raised an astonishing $438, 565 during the week of June 17-21 in support of the Stollery Children’s Hospital Foundation.

Thank you to the incredible Stollery families, donors, volunteers, presenting sponsor Great Canadian Roofing, Siding and Windows, and all of the listeners for their generous support.

Your caring donations help to fund excellence at the Stollery Children’s Hospital in the form of specialized equipment, education to train the best and brightest medical minds, research to pave the way to the discovery of new treatments and cures for child health issues, and specialized programs to improve patient and family outcomes. It’s all about the kids!

A special thank you to the following sponsors:

MEET THE specialist

AIR

SuppoRt

BY Deepti Babu

Dr. Allan de Caen is a 20-year expert in critical care whose position on the pediatric Transport Team broadens the Stollery’s reach

PHOTO: LAUGHING DOG PHOTOGRAPHY

I

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f you’vE EvEr wonDErED wHy soMEonE woulD cHoosE a carEEr

that involves taking care of critically ill children, Dr. Allan de Caen has your answer.

Dr. de Caen is the medical director of the Stollery’s pediatric intensive care unit (ICU), as well as the hospital’s Transport Team. According to the doctor, his involvement in pediatric intensive care stems from watching mentors early in his pediatrics training.

“I was drawn to pediatric intensive care by meaningful exposure I had with role models; these made a deep and lasting impression on me,” he explains.

Mentors aside, Dr. de Caen’s work in the pediatric ICU is exciting. “Let’s face it, people working in intensive care specialties are usually adrenaline junkies – there is nothing more gratifying than taking a child who is so sick, helping them get well, and seeing them walk back to the pediatric ICU six months later to visit.” He describes intensive care work as dramatic. “Five per cent of the time, it’s very sad. The other 95 per cent of the time it’s a wonderfully positive and fulfilling experience to help these families.”

Health and medicine intrigued Dr. de Caen from an early age. As a kid, he always wanted to help people. He volunteered with St. John’s Ambulance during his youth and, after he finished medical school, he started a career in pediatrics and pediatric critical care medicine. “When I realized someone would actually pay me to be with children and their families, and be able to help them – pediatrics just seemed like a natural fit,” Dr. de Caen explains.

Dr. de Caen, too, has been a natural fit since he came to the University of Alberta Hospital in 1994 as a pediatric intensivist. During his time he’s seen quite a bit of change at the hospital. Even today, the Stollery’s intensive care program is undergoing a transition from two intensive care units to three specialized ones: a neonatal ICU, the pediatric ICU, and a cardiac ICU. Dr. de Caen explains that the needs of critically ill children have become increasingly complex, so different teams with specialized areas of expertise are needed to look after them. “We have an opportunity to transform the health of kids

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Sky iS the Limit: The Stollery’s reach is well beyond Edmonton. Dr. Allan de Caen (centre), the Transport Team’s medical director, Don Granoski (right) team coordinator, Kristin Balon (left), team nurse, represent the transport teams that take to the sky to care for children throughout Western Canada.

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Miracle Workers: Thanks to this year’s CN Miracle Match, the Stollery’s Transport Team will receive additional funding. This will allow the department to continue to grow and make the Stollery Children’s Hospital more accessible throughout Western Canada. in a way that can benefit from the strong programs that exist in Transport Team flourish because it allows the great work being done at the pediatric ICU right now – like transport medicine, research, and the Stollery to serve beyond the borders of Edmonton and, ultimately, technology,” he says. “This will allow us to build programs of excel- help as many sick kids as possible. “I’m most proud of the high standard lence collaboratively for kids who come to the Stollery.” As someone of teams even when the physician isn’t along on the trip. These folks go bridging the past, present and future, Dr. de Caen sees himself as a out in teams of two, sometimes boarding a plane for long hours in shepherd to bring forward shared the night to stabilize and pick up a ideas during this transition period. really sick child – that takes really Each year the Transport Team brings Over the years, Dr. de Caen has amazing, special people.” approximately 200 critically ill or also seen substantial change in the Clearly, the Stollery’s reach is far injured children to the Stollery.

Transport Team. Patients are transbeyond Alberta’s boundaries. “We ported by the team and parents are the major prairie centre to help meet up with them after. Dr. de Caen was there in 1995, when the first care for kids in the ICU setting. Many people have invested in strengthversion of the pediatric ICU Transport Team was created. He brought ening our transport services, and this began years ago,” Dr. de Caen the idea forward with his administrative colleague, Janet Adams. “The says. “This is where the strength of the Stollery’s program lies: it is based goal was to bring ICU care to children in the communities at a dis- out of a centre with a vision to provide excellence beyond its borders.” tance,” he explains. “Today, I mainly oversee the medical aspects of If history is any indicator, there should be many successes ahead that this, providing guidance and medical education.” impact children and their families across Western Canada.

Since that time, Dr. de Caen has seen the pediatric ICU Transport Team grow tremendously, broadening the Stollery’s reach. The team Numbers to Know responds to emergency calls from health-care facilities throughout 1. The PICU’s Transport Team was created in 1995. most of Alberta, British Columbia, Saskatchewan, Manitoba, Yukon 2. Every year, approximately 200 critically ill and injured children and the Northwest Territories. Every year, approximately 200 criticaccess these transport services. ally ill and injured children access these transport services. In the 3. 30 per cent of Transport Team flights have a doctor aboard. Most most complex cases, the physician will join the team that consists of flights have a respiratory therapist and a nurse, each with specialized a respiratory therapist and nurse, each with additional training. These training. teams take the long trips to stabilize children and bring them back 4. The average time the Transport Team is gone is five hours. to the Stollery. “The average time the Transport Team is gone is five 5. Between 50 and 60 per cent of transports are done by plane, hours,” Dr. de Caen says. “About 50 to 60 per cent of transports are the rest by helicopter and ground. done by plane, so they are travelling a long distance.”

Dr. de Caen finds great satisfaction in watching the pediatric ICU 16

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Bird’s-eye view: Since the Transport Team’s inception in 1995, Dr. Allan de Caen has seen the program grow. He oversees operations from the Stollery.

IllUStRatIon: HEff o’REIllY

feature HERO

Long-Term

reLaTionships A Stollery transition program helps diabetic teens develop healthy habits for adulthood

L

iving with a Life-Long iLLness from an earLy

age presents a unique set of challenges, especially when that condition requires daily management. At first, parents are there to make sure everything is done correctly, but what happens when kids become adolescents and young adults? At the Stollery’s Pediatric Diabetes Education Centre (PDEC), a transition program designed for youth between the ages of 15-and-a-half and 17 living with Type 1 diabetes, young patients learn to prepare for and succeed in the world of adult health care.

Type 1 diabetes is characterized by an inability to produce insulin, a hormone necessary for controlling the level of glucose, or sugar, in the blood and for turning glucose into energy. Most people are diagnosed when they are children or adolescents. Living with the S TO L L E RY K I D S. C O M

BY tricia radison

condition requires monitoring glucose levels at least four times a day, ensuring insulin is taken in the right quantities and at the right times, and weighing and measuring food and drinks to calculate the amount of carbohydrates, day in and day out. It’s also important for those with Type 1 diabetes to visit their clinic regularly – at least twice a year – to monitor blood glucose levels and find out if there are changes they can make to achieve better results.

Depending on a child’s age, parents are involved to one degree or another in day-to-day diabetes management and clinic appointments. But, as kids become young adults and take over full responsibility, problems can arise that have serious consequences both immediately and later in life. Improperly managed diabetes can lead to a heart attack, stroke, amputation, kidney disease, eye disease, nerve damage and more.

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“There is a lot of documentation showing that a number of the kids “I was in the ICU at a hospital in another city for a week right after I who go to adult programs actually fall out of care entirely; they stop was diagnosed and they were really strict on everything. They wouldn’t let going to appointments. It’s not until they have an acute emergency, me get fast food and there was even a list of the only things I could eat. I like severe low blood sugar or diabetic ketoacidosis, that they get con- thought it was going to be like that forever, but once I got out and we went nected into the adult program,” says Karen Johnston, one of the nurse to the Stollery, I found out I can do whatever I want as long as I count practitioners at the Stollery who works with young people who are carbs. They helped a lot,” says Lee, now 17 and about to enter Grade 12. transitioning to adult care.

When he was younger, Lee’s parents reminded him to test his blood Young people have a lot going on – post-secondary school, work- sugar levels and to give himself insulin. Within a year or so, he was doing ing, friends, dating, supporting everything on his own. themselves in their own places Lee uses an insulin pump, a device “The idea is to help improve their – so it’s understandable that both worn outside the body that delivers knowledge and their diabetes control, the daily tasks of managing diainsulin 24 hours a day, and makes and assess if there are any other issues.” diabetes management much easier. betes and clinic visits might fall by the wayside. Complicating Other than that, he says his life isn’t matters, they often have to leave longtime health-care providers and really that different from anyone else’s. “I just have to be a bit careful,” he a more supportive setting for the adult health-care world. The PDEC says. “If I exercise I have to be careful that my blood sugar doesn’t go low. transition program provides assistance to help them in both areas.

When I eat or drink something, I have to weigh and measure it, and just “The idea is to help improve their knowledge and their diabetes make sure I’m counting everything correctly.” control, and assess if there are any other issues, like mental health But Lee does identify with the challenges that young people can run disorders such as depression and anxiety, that we can help them with into. Until about a year ago, he confesses, he didn’t bother to weigh before sending them off,” says Karen. “Then, for the first two years and measure his food and drink. His glucose levels were constantly after they are in adult care, they can attend joint workshops that the on the high side.

Stollery does with the adult program, and come in and talk about any “I smartened up a bit and realized that it would be bad in my older issues they might be having.” years if I kept on going like that,” he says.

Lee Nagorski is a recent graduate of the transition program. Diagnosed Lee recently had his first visit to the Kaye Edmonton Clinic at at age 13, Lee became a big fan of the Stollery when he found out his life the UAH as an adult patient. Thanks to what he learned at the wasn’t going to be as restricted as he’d anticipated.

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and for his new responsibilities.

Nicole Moffatt feels the same way. Diagnosed at six, she’s been attending the PDAC for years and, at 18, is now in adult care at the Edmonton Clinic.

“In adult care they expect you to be more involved and really independent and doing everything yourself,” says Nicole. “Karen and the other nurses prepared me well. They helped me understand what to expect and to get used to going to appointments without my mom.”

Like Lee, Nicole, who just completed her first year in nursing at the University of Alberta, uses an insulin pump that has made managing her diabetes easier. She recalls not wanting to go to school when she was younger because she felt so different; she had to have two injections of insulin a day and her watch would beep to tell her to eat at specific times.

After getting the pump eight years ago, she can eat when and how much she wants to, just as long as she counts carbs.

But, as it happens to everyone with diabetes, there are days when her blood sugar isn’t where she wants it to be. Drawing on everything she’s learned through the PDEC, Nicole makes the decisions on how best to manage those situations, but likes to check with her parents to see if they agree with her.

One of the biggest challenges for teens and young adults is feeling that they’ll be judged if they tell their health-care providers that they have been skipping injections or neglecting to weigh food. Members of the transition program overcome that right away.

“I tell them I’m not willing to be the diabetes police or their parent.

I’m not here to judge. Nobody’s perfect, and if you tell me what you’d like to work on, that’s where we’ll start,” Karen says.

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Cindy Feland is a diabetes nurse educator at Kaye Edmonton Clinic.

Along with a dietitian, she participates in the workshops at the Clinic with the transition program, and says they offer youth an opportunity to talk about the things they want to talk about. A speaker, who provides a brief introduction, will usually start the event, and participants are asked to anonymously submit two burning questions. With no parents allowed, youth have the chance to talk about topics that they might not feel comfortable broaching with mom or dad in earshot.

“This transition can be tough for kids, and for their parents. This program is really valuable and does such a great job of preparing them to come here,” says Cindy. “They talk to them about the questions we are going to ask here, and their responsibilities – like making sure they have their blood work done ahead of time so we have the results when they come to their appointment.”

Nicole hasn’t attended any workshops at the adult clinic; she just doesn’t have the time and isn’t struggling with anything right now. Lee is planning to attend an upcoming workshop to learn more about insulin pumps. Both young people say it’s comforting knowing that the Stollery is still behind them even though they’ve moved on to adult care.

“They know it’s hard enough being diabetic. They are trying to make it easier and have the support system there if you need it,” says Nicole.

“It’s great to know that they still care.”

Go online: for more information search Pediatric Diabetes Education Centre on albertahealthservices.ca.

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Photo: JaSon EvERitt

one TO WATCH

CraCk the Code: Dr. andrea haqq and her team use a state-of-the-art medical facility to study the autonomic nervous system of children with Prader Willi Syndrome. the team hopes to gain insight into the genetic condition.

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Problem

Solver

BY Scott Rollans

Dr. Andrea Haqq and her colleagues look to a rare genetic disorder to answer puzzling questions about childhood obesity

i

f childhood obeSity weRe a StRaightfoRwaRd

problem with a simple solution, Dr. Andrea Haqq’s job would be easy. Unfortunately, it is a perplexing, multifaceted puzzle, and we have barely begun the arduous task of piecing it together.

“The regulation of body weight is complex,” says Dr. Haqq, at her research office in the Alberta Diabetes Institute. “People think, oh, you can just move more and eat less and you’re going to lose weight. But, it’s actually not that simple and not that effective at all. So now we’re trying to understand the underlying biochemical basis behind different categories of childhood obesity.”

Dr. Haqq and her co-investigators believe that Prader Willi Syndrome (PWS), a rare genetic disorder, may hold some clues to help us better understand the root causes of childhood obesity – and, eventually to design therapies that will effectively target those areas.

Prader Willi is characterized by relentless, insatiable hunger, a problem that can dominate the lives not only of children with the syndrome, but their entire families as well. “The parents have to control their whole food environment all the time,” explains Dr. Haqq. “So, that means locking the cupboards, locking the refrigerator. You really have to be careful at school, watchful at any family outing, or any social event.

So it’s really all-consuming for the parents.”

Children with PWS have elevated levels of a hormone called ghrelin, which stimulates hunger. As a result, it is not surprising that many children with PWS are profoundly obese. Yet, at the same time, the syndrome seems to protect them from some of the metabolic problems that normally go along with obesity, such as insulin resistance, Type 2 diabetes and cardiovascular disease.

Dr. Haqq and her co-investigators hope to find out why. They believe that part of the answer lies in the autonomic nervous system, which controls our bodily functions that don’t involve thought, such as heart rate, blood pressure, perspiration and pupil size, for example.

People with Prader Willi exhibit some anomalies in their autonomic systems, says Dr. Haqq. “They don’t sense temperature normally. They won’t manifest a fever if they get sick. They don’t vomit if they get sick.

They don’t sense pain; if they have a broken leg, for example, they won’t necessarily tell their parents. A lot of those features would suggest autonomic dysfunction. We’re trying to look at that in more detail, and understand specifically what defects they have at what level.”

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To precisely measure autonomic responses under controlled conditions requires highly specialized and sophisticated equipment.

Fortunately, the Stollery has a facility – unique in Canada – specifically designed for these kinds of projects. “The autonomic nervous system is generally hard to investigate,” says pediatric neurologist Dr. Lawrence Richer, a co-investigator on Dr. Haqq’s project. “But, through our lab – and this is really a Stollery Children’s Hospital Foundation-funded lab – we’re able to do some of that investigation in children.”

In the lab, children with PWS are put through a number of tests, like blowing against resistance, for example, or lying on a table that gradually tilts them from horizontal to vertical. The researchers observe and measure their autonomic responses. By comparing those findings against data generated by more typical test subjects, Dr. Richer and Dr. Haqq hope to gain some insight into the specific differences. “It’s a new area of exploration, and it might actually help us understand the same kinds of disturbances we see in obese children,” says Dr. Richer.

Dr. Haqq says the Stollery and the University of Alberta offer a fertile environment for collaboration. “The expertise here is excellent in different disciplines,” she says. In addition to Dr. Richer, a pediatric neurologist, her co-investigators on the study include Dr. Arya Sharma, an adult obesity specialist, and Dr. Darren DeLorey, an exercise physiologist.

Dr. Haqq’s projects are funded by the Canadian Institutes of Health Research, and she receives further support from the Stollery Children’s Hospital Foundation for Prader-Willi Research, the Alberta Diabetes Institute, and the Women’s and Children’s Health Research Institute.

She also works closely with a broader community exploring childhood obesity, including several close collaborators in the U.S. such as Dr. Mike Freemark and Dr. Chris Newgard at Duke University. “I am a firm believer that you have to collaborate internationally to be able to understand these complex problems of the underlying basis of childhood obesity,” Dr. Haqq says. “International collaboration leads to better science, higher impact publications and more innovation in general.”

Above all, though, Dr. Haqq gives credit to the families and children taking part in the study. “We’ve had families flying in from Toronto, from California, from Chicago. So, really the patients and the families are amazing. They are very motivated to find answers to these problems.

They’re donating their time and have donated money from fundraising to help further this research agenda.”

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Pool Party: Thanks to Make-A-Wish Northern Alberta, Stollery patient Emily Shiner can enjoy her favourite pastime, swimming, whenever she wants in the family’s new hot tub with her mom Wendi.

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feature HERO

A Matter of Life and

BreAth

BY Omar mouallem

The tracheotomy may be one of the oldest surgical procedures, but Stollery patients with life-threatening breathing problems receive cutting-edge special treatment

PhOTO: NICOLE NOYCE

w

HEn Emily SHinER waS bORn, fEw tHOugHt therapy to nutrition to the sleep and pulmonary specialists, so that she would ever be able to communicate or even do any- the respective team members can review their progress and ensure thing on her own. But this past June her Make-A-Wish their wellbeing. present, a hot tub, arrived at her family’s Lloydminster It’s rare that any two children on these Friday mornings will have the home and she was able to express her joy using her iPad picture same disorder. It may be a lung abnormality, a neuromuscular weakness book by pointing excitedly to her new favourite activity: swimming. or other conditions. But what unites them all is one of the oldest surAnd yet, these aren’t the greatest gical procedures: the tracheotomy, accomplishments of the five-yearor “trach” (rhymes with “rake”) for Because there are so many breathing old. What’s most amazing is what short. A trach is an air passage to the conditions and needs, each child you don’t see. windpipe that surgeons introduce can only progress as fast as his or For the first time since birth at the base of the throat when the she’s breathing without any aid. normal route for air has been obher body will allow.

No ventilator, no tracheotomy. structed in some way. At the centre Just a few days before her present arrived, the hole in her neck that of this specialized clinic is pulmonologist Dr. Carina Majaesic, who crehad been there for four years was surgically closed. Now she can ated the one-stop clinic a decade ago. Relative to other Canadian hospienjoy the pool all she wants. “She went from barely surviving on a tals, she says, the Stollery’s multidisciplinary concept is cutting-edge. ventilator to breathing normally,” says her mother Wendi Shiner.

Dr. Majaesic, pulmonologist and medical program director for the “It’s like nothing ever happened.”

Stollery, who calls herself a true U of A product, completing her eduWhile many children in our province may have respiratory prob- cation from undergrad to post-doctorate on the campus, also leads lems such as asthma, there are others who require medical technology the Stollery’s other breathing problems for children requiring masks to breathe. Like these children who require breathing support, Emily and bipaps. But, the support for children such as Emily is trickier she needs special care. She has an infinitesimally rare chromosomal disor- says. “For children who are ventilator-dependent, it’s quite an invasive der that, among other symptoms, prevented her lungs from reaching thing. Not just in terms of the tracheotomy for the child but also for normal size. Emily visits the Stollery Children’s Hospital respiratory the family. We offer them quite a lot of support at home because, if clinic to see the specialists involved in her care. that child disconnects with the ventilator, it’s likely they’ll succumb.”

One Friday every month, the F Wing on the fifth floor of the Stollery Rachael McCoy is learning these everyday challenges first-hand. looks busier than normal. As many as 20 families of children with This summer, for her first vacation in a long time, she and her breathing support rotate between the various rooms, from speech husband took along two LPNs on their road trip to help with Emma, S TO L L E RY K I D S. C O M

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Photo PRovidEd by: ALbERtA hEALth SERviCES

TracheoTomy 101: Emma McCoy requires a tracheotomy to help her breathe. Luckily, her mom Rachel was able to learn the everyday tasks associated with a trach from Stollery staff.

the youngest of their three daughters. “There’s not much room to pack Probably the most attentive and time-consuming need is suctionanything else,” she jokes. ing the trach. “If you or I get anything in our throat, we can just cough Two-year-old Emma is in Rachael’s arms; her bright blue it out or swallow it,” explains Rachael. “But for Emma, everything has eyes match her mom’s closely. Locked in each other’s gaze, it’s easy to come out of the trach. So if she gets something in there, we have to now for Rachael to smile but getting here has been terrifying. It some- suction it out otherwise it gets clogged and she can’t breathe.” times still is.

This was not something she had to learn for the first 10 months Seventeen weeks into her pregof Emma’s life, as her daughter nancy an ultrasound revealed spent that time living in the Stol“Once children get started on Emma had Tetralogy of Fallot, lery. “When we brought her home, noninvasive ventilation, they get a new it really felt like all we did was suca heart abnormality, as well as a lease on life,” says Dr. Carina Majaesic. tion her all day. Today she can go missing thumb and a missing radius bone on her right leg. When one or two hours.” Still, it’s not she was born, doctors told her mother that she had VACTERL, an acro- long enough that Rachael can do simple tasks like go grocery shopnym for a syndrome that is diagnosed when a child has any four of ping with Emma or even risk a quick errand without her husband a set of seven birth defects. The one that sends Emma to the month- or a nurse in the same vehicle as her daughter. “She always needs an ly clinic is the “T” in the acronym – tracheoesophageal fistula. Her adult beside her in the car, just in case.” esophagus was disconnected.

Wendi recalls the period of time Emily required a ventilator to help “I had no idea what I was dealing with,” says Rachael. “I’d never her breathe at home, it was like a nightmare. “I had to take oxygen even seen a trach before I saw it on her.” After two years of her with me, because she was on oxygen 24 hours a day,” she says. “I was daughter’s treatment, she’s starting to get the hang of it. But, it can be going to the supermarket with one bag of trach supplies, one bag with a steep learning curve. oxygen in it and another with a suction pump.”

“Most of these kids with tracheotomies also have feeding tubes At home, it was no better. The ventilator was so loud she had a in their stomachs,” says nurse coordinator Cathy Schellenberg. “So friend move it into the basement and plumb Emily’s tubing through we follow their growth and weight; we look at everything to do with the floor to the rest of the house. That way she could watch TV in her feeding, and the speech therapist looks at not just how they talk but room or sit at the breakfast table like her three other siblings. “They’re how they swallow.” a very resourceful family,” says Dr. Majaesic. “If you’re a resourceful 24

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conditions only worsen over time, and then there are the extremely rare cases of hypocentralventilation syndrome, where an otherwise perfectly healthy person can’t breathe. “They have perfectly normal lungs, perfectly normal diaphragm, just” – she points to her head – “no driver.”

Because there are so many conditions and needs, and each child can only progress as fast as his or her body will allow, the end goal is not necessarily for children to live without any breathing aid. “Our philosophy,” says Dr. Majaesic, “is to provide for the children and their families what they need in order to live in their communities.”

That’s where the Shiners are today, and that’s where the McCoys hope to be soon.

This past year Emma has started eating. Her favourite food is spinach. She’s also started talking, though it can be hard to get her voice through the trach tube and past her vocal chords.

Her mother is confident that she’ll get better with practice, and before she knows it, the time will come when doctors remove the trach, the hole in her throat will heal over, and she’ll be able to play as hard as her older sisters do.

Photo PRovidEd by: AlbERtA hEAlth SERvicES

family, then this will work well, but you have to be willing to live on the edge a bit.”

This is where the clinic really comes in handy, as staff members take parents and even grandparents through the tasks that will soon be part of their routine. But, before parents decide that a tracheotomy is right for their child, they’re assessed and briefed. Dr. Majaesic wants to be confident parents can handle it by ensuring that they have extended family or other support, and that the home has safe air quality. “It’s easier for the families if they know ahead of time what it’s going to be like and what support the team can provide – particularly in the home, so that they can make decisions based on fact.”

For Wendi, it was this style of care that she admired most about the Stollery. “These doctors would ask me, ‘What do you see? What do you think?’” she recalls. “When I look for a doctor, I look for somebody that listens to me because, really, I’m with my child 24 hours a day; as her mother, I know what she needs.”

It’s a big contrast from the first doctors who saw Emily immediately after she was born in 2008. Back then, Wendi, who lived on the Saskatchewan side of Lloyminster, was told by her Saskatoon doctors that there was little hope for the girl born with a duplication of chromosome 14. “They were telling us she couldn’t breathe on her own, her chest was too small to breathe, that she had apnea, all kinds of breathing problems, so their plan was to get her on do-not-resuscitate and take her off the ventilator.”

Wendi, whose career is helping families of children with developmental needs, went for a second opinion in Calgary where Emily’s life started turning around. Shortly after that she became a regular at the Stollery, but now that Emily is off the ventilator and trach, the clinic is seeing less and less of her. It’s great news, but she still needs careful attention and breathing support on occasion.

“Once those children get started on noninvasive ventilation, they basically get a new lease on life,” says Dr. Majaesic, who likes to compare the transition to a new pair of glasses. “If you don’t see anything, you’re fumbling around, but as soon as you get glasses on, it’s like, ‘Wow, there’s a whole world out there.’ ” They can now breathe, sleep at night, function during the day and their lives becomes a lot better, Dr. Majaesic explains. That’s not just a renewal for the children, but their entire families.

But Dr. Majaesic says there are some cases where families have to cope with it their whole lives. For children with neuromuscular diseases that disturb their breathing, for example, their

Free Wheeling: Emily no longer needs a trach and ventilator to help her breathe and is seeing less and less of the Stollery.

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A dAy At the BeAch: Melody Duncan and Julia Palladino are child life specialists at the Stollery who spend a lot of their time at The Beach, a playroom that helps minimize stress in the hospital’s patients.

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feature HEro

Behind

The SceneS

Photo: CURtiS tREnt

BY Alexandria Eldridge

Doctors, nurses and researchers aren’t the only life changers working at the Stollery

A

n opErAting room usEd to bE cAllEd An opErAting

theatre. And, on that stage, and throughout the hospital, the doctors are the stars of the show. But there are countless people and departments that work behind the scenes, supporting doctors and making it possible to provide patient care of the highest quality. Without these people, the show – or the hospital care, in this case – could not go on.

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PHoTo: cURTiS TREnT

SUN AND SAND: The goal of The Beach is to build a child’s self-confidence, mastery and autonomy during his or her hospital stay. Having fun is also encouraged.

One of the big events kids face at the Stollery is a trip to the operating room for surgery. And an integral part of the behind-the-scenes team at the Stollery includes clinical nurse educators like Lorraine Willox. Nurse educators work in different departments, providing education to nursing staff, but Lorraine’s focus is education for the operating room.

Lorraine orients new staff and provides continuing education for existing staff, as well as acting as an informal resource for the nurses. She provides troubleshooting on everything from computer issues to questions about guardianship and consent. “Nurses don’t have the time, because there’s pressure to get the cases done, to give quality care and to be with the patient. With a lot of that administrative stuff or troubleshooting stuff, they can involve me and we can get it processed quickly,” she says.

But, Lorraine doesn’t just work in education. She also works directly with the young patients and sees firsthand how stressful the experience can be for them and their parents. So part of what Lorraine and other nurses do is take care of parents, too. “We often have to care for them as well and make sure they’re okay, so that as soon as possible we can get them back with their child. Because they’re the best child caregivers – they’re the experts, they know their child, and we rely on them.”

Whether or not they have had surgery and directly or indirectly benefitted from Lorraine’s care, some kids remain at the hospital for extended stays. For these kids, Melody Duncan and Julia Palladino become important parts of their care team.

These two women are another part of that support team at the Stollery.

They don’t perform surgeries or administer medications, but their job is important. As child life specialists, they educate, prepare, and provide support for children of all ages and – as is the case with Lorraine – support their families during their hospital stay.

A large part of helping kids cope takes place at The Beach, a playroom on the fourth floor of the Stollery. A destination at the hospital for 10 years, it’s decorated with beach scenes and filled with toys for children to play with, from an air hockey table to a sandbox. “It’s an open-ended play area where children of all ages can participate in a variety of experiences,” explains Julia. “Playing is an important part of a child’s life; it can 28

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help minimize the stress and anxiety that can be associated with being in the hospital.”

At The Beach, Julia and Melody try to alleviate some of stress in the young patients by running programs at the facility when children have some time away from the doctors and nurses. They often host special events, such as having the Edmonton Oilers or the Disney Princesses come in to visit the children. They plan parties and special activities once a month, and have a family bingo night every Wednesday. Every weekday between 9:30-11:30 am and 1:30-3:30 pm, children are welcome to come to The Beach and play. While some of the daily play is themed, for the most part, it’s intentionally left open-ended. “When children come to the hospital, control gets taken away from them. They don’t have choices – they have to take their medicine, they have to do this test, or that procedure,” Melody says. “Here at The Beach, we try to let the children have choice and control over the types of play activities.

The goal is to build a child’s self-confidence, mastery and autonomy.”

And because nurses and doctors are often busy treating their patients, The Beach can fill the gaps. Kids come here to learn about any procedures they’ve experienced. There’s a medical play area, complete with a child-sized doll on a miniature hospital bed and toy medical equipment. “Children can talk about or play through the things that have happened to them at the hospital, like if they’ve had surgery or if they had to have pokes, a nose tube or any of those things.” Melody says.

“We can assess and make sure they’re understanding what’s happening to them.” Doctors are not allowed and no medical procedures can take place here so it also provides a safe space.

The Beach is the only playroom that’s staffed in the hospital, and because it’s staffed, it gives the child life specialists the chance to interact with the children on a daily basis and informally assess them in a group setting. There are also child life specialists on all the in-patient units that collaborate with the rest of the medical teams to share important information. The child life specialists agree that, in a natural setting for a child like The Beach, children may feel more comfortable expressing their feelings, fears and any misconceptions of their personal experiences within the hospital.

For Julia and Melody, building relationships with parents and providing support to them, so that they can in turn provide support for their child, is something they think is important to helping the whole family cope. That’s why The Beach provides a space for parents too. “It’s a place for parents to come and relax a little bit, see their child doing some of the normal things and network with other families,” Melody says “It can be a real source of support.”

As with Lorraine Willox’s work caring for surgical patients and adding value to the team, Julia and Melody’s work adds up to less stress for parents and better care for patients – something all members of the team at the Stollery take very seriously. “These parents are handing over the centre of their universe to a virtual stranger, who they know intuitively is going to hurt them – to make them better – but ultimately, surgery means a stranger is going to be cutting into their body,” Lorraine says. “And that’s an awesome responsibility, and for them to have that trust in us. It’s something that we don’t take lightly.”

Child life specialists and nurse educators aren’t the only unsung heroes of the Stollery. There are many different departments – from social workers to psychologists to physiotherapists to doctors and nurses – whose combined efforts provide care for the children. “We work together as part of the whole team – we all work to help that child in whatever capacity that’s needed,” Melody says.

It’s programs like The Beach, and people like Julia, Melody and Lorraine that make the difference for families at the Stollery. They may not be providing direct medical treatment, but what they do makes a difference.

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feature HERO

Bear

Necessities

BY Robin Schroffel

ATB’s Teddy For A Toonie campaign pitched in to redevelop and upgrade the Stollery’s critical care units

E

vERyOnE knOwS HOw mucH cOmfORt a tEddy

PhOTO PROvIDED BY: ATB

bear can offer a child. But each May, there’s one bear that takes it further and makes a difference for children all across Alberta. That bear is the star of ATB’s Teddy For A Toonie campaign, an annual province-wide, month-long fundraiser that raises money for Alberta’s two children’s hospitals.

ATB has been a Stollery partner since the hospital opened its doors in 2001. Each May, ATB’s 171 branches and 130 agencies raise money through donations, teddy bear sales, and special events like golf tournaments and bed races. In 2012, the Teddy For A Toonie campaign brought in $425,000 for the Stollery. In 2013, that number was substantially higher according to Wellington Holbrook, executive vice president, ATB Business & Agriculture, who just finished his second year as the Teddy For A Toonie campaign lead. When the opportunity came up last year, Wellington says he jumped at the chance to take over.

“Anybody who’s lived in Alberta for any length of time and been around kids can tell a story about an experience at the Stollery that’s been life-saving or life-changing,” he says. “It’s something that our whole organization is really able to rally around.”

Helping sick children is a cause that lies close to the hearts of many at ATB. In fact, some of the miracle children featured on ATB’s Teddy For A Toonie campaign posters are the children or grandchildren of ATB employees. “Kids pull at the heartstrings in a very different way than other worthy causes. When you see kids that need help, it makes everyone want to run towards them and help them,” Wellington says.

“We’re lucky we have such a great group of employees here. They rise to the occasion every time.”

Each year, ATB sits down with the Stollery and identifies a specific cause that Teddy For A Toonie’s contribution will go toward.

In previous years, funds have supported pediatric emergency and the development of the Stollery’s operating rooms. This year, the money

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will help make the hospital’s critical care redevelopment a reality. 16 single-patient rooms for a total of 48 intensive care beds.

Although the Stollery’s pediatric intensive care unit (PICU) and For Wellington and his team, the opportunity for ATB to contribute neonatal intensive care unit (NICU) have been continually updated to the redevelopment is extremely rewarding. He recounts a recent visit over the years in terms of equipment, the actual space available hasn’t to the Stollery, where he witnessed the mother of a nine-month-old changed since the early 1980s. infant at the bedside of her child following a heart surgery. “It was a Terra Mckay knows the need for the redevelopment of the Stollery’s completely open area because there just isn’t private space. How hard critical care facilities first-hand. Her daughter, Sadie Gourley, was that must be, suffering, and seeing your tears and your hopes and just four months old when she all your emotions that would go went in for surgery to repair a hole into that moment, you’re doing it “We have our sights set on in her heart. The only place Terra in full public where you can’t have raising the bar for the Stollery,” wanted to be was at her daughter’s a moment alone with your own ATB’s Wellington Holbrook says. side 24/7 – which is difficult in the child,” Wellington says. “It’s pretty current PICU as space is extremely motivating to think that through limited. “To me, the only negative part – besides our child having the the fundraising we’re doing, we can actually make a difference in that heart surgery – was the PICU, just because I couldn’t stay with her,” experience for that mother.”

Terra says. “The families are squished around the beds together. You can Stories from parents and children who’ve had experiences with the see all the trauma that other little kids are going through.”

Stollery are what drive Wellington and the ATB family to build Teddy For Lorianne Finck, development officer for corporate giving with the A Toonie, with an aim to make the campaign even bigger and better in Stollery, says that redeveloping the critical care units is vital to main- future years. “We have our sights set on really raising the bar in the next taining the level of family-centred care the Stollery is known for. “Every- few years for the Stollery and the other children’s hospital in Alberta we thing is to the minute in the intensive care unit. That’s why the redevel- support,” Wellington explains. “I think the best is yet to come.” opment is so important – to have all of the right resources in the right places at the right time so that we can continue to deliver excellence.”

With the support of ATB and the provincial government – which Hibernation Period: Although this year’s officially announced the $55-million project on June 20 – some Teddy For A Toonie campaign is over, ATB will major changes are about to happen to the Stollery’s critical care fastill match 15 per cent of every donation to cilities. Under the project, set to begin in 2015, the current 15-bed the Stollery Children’s Hospital Foundation made through www.atbcares.com or at NICU and 24-bed PICU will expand. With the development of a any of the organization’s local branches. pediatric cardiac intensive care unit will be created in the Mazankowski Alberta Heart Institute. Each of the three units will contain

Watch them play

AND DoNAte to Get sick kiDs bAck to plAyiNG

Stacy Lewis LPGA Player

Make a donation today* As proud sponsor of the CN Canadian Women’s Open, CN invites you to make a donation to CN Miracle Match for the benefit of the Stollery Children’s Hospital Foundation, helping them offer specialized services including pediatric transport teams that provide children in rural and remote communities with life-saving care.

It’s the perfect occasion to support a great local cause and help give our children in need the best possible care. *

Donate at:

Visit CNMiracleMatch.ca for details.

August 19 to 25

Royal Mayfair Golf Club, Edmonton, AB

cncanadianwomensopen.com 1-866-571-5742

BY Debby Waldman

alumni files

Reigning Champion The Stollery’s first ever Champion Child is now in his 30s and leads a very active life

PHOTO: BUFFY GOODMAN

HigHligHt Reel: Once Peter Pocklington invited Jordan to watch an Oilers game from the owner’s box. After the game Jordan met with the Oilers and left with Craig MacTavish’s hockey stick.

JorDan sharkey WeigheD Just over five pounds when he was born three months early on January 10, 1982. After losing excess fluid from his body, he reached his official birth weight of three pounds, two ounces. Shortly thereafter, he dropped to two pounds.

Jordan’s parents, Tom and Dianne, knew there was a chance their baby would have medical problems because Dianne is Rh negative. (During pregnancy, an Rh negative woman’s body will recognize the Rh positive blood in the growing baby and create antibodies to attack what it deems an “intruder,” which can lead to miscarriages, or other symptoms that can affect both the child and the mother.) Still, they never expected that Jordan would need six procedures to replace all of his blood.

Or surgery to repair a hernia attached to his appendix. Or that he would fight pneumonia repeatedly, and be hooked to a respirator that kept him alive but scarred his lungs, leaving him with bronchopulmonary dysplasia.

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At six months old, Jordan finally left the neonatal intensive care unit (NICU). After a week at home, during which he was tube-fed and gained one pound, he returned to the University of Alberta Hospital. Not long after, he moved to the Edmonton General Hospital, which became his home when he was 18 months old.

And yet, the first thing you notice about Jordan isn’t the oxygen tank trailing behind him when he answers the door at the Mill Woods home he shares with his parents. Nor is it the hearing aids he wears because medication he was given as an infant damaged his auditory nerves, leaving him with profound hearing loss.

The most striking thing about Jordan is his charm.

It emanates from him like light from a 1,000-watt bulb.

Slight and slender, with the broad shoulders of a gymnast, he has a smile that encompasses his eyes, his mouth, and even his speaking voice.

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PHoTo: BUFFY GooDMAN

Life’s BLessings: For the picture, Jordan doffed the oxygen hose he wears at all times.

He hasn’t let that get in the way of Ukrainian dancing and rock climbing.

“He embraces life,” says Stollery child life specialist Sandy Farquharson, who was a play therapist at the Edmonton General and the Grey Nuns when Jordan was a frequent in-patient at the latter in the mid-1980s. “He’s one of those kids with an amazing zest for life in spite of his medical setbacks. Nothing stops him.”

Despite his hearing loss, Jordan is a music fan: he has an extensive collection of CDs and loves attending concerts.

He says he feels the music “My parents told me that there in his chest (and, when he is no such a thing as can’t, blasts it, his parents feel it just that you have to try your everywhere).

Jordan also loves to best. They let me try anything move around. Farquharson I wanted to try and they found remembers him driving the a way to make it possible.” nurses crazy at the Grey Nuns, running around the unit every morning. Eventually he found a way to channel his energy: he took up Ukrainian dancing and Irish dancing, all the while attached by 50 feet of tubing to the oxygen tank that has been part of his life since infancy. He also learned to ski and rock-climb.

A graduate of Holy Trinity High School, Jordan has spent the past 10 years working at Real Canadian Superstore, first in the bakery and now as a store host. In his spare time he plays soccer (short shifts without his oxygen tank) on his older sister Shannon’s co-ed team and spends time with his three nieces, whom he adores.

“My parents told me that there is no such a thing as can’t, just that you have to try your best,” Jordan says.

“They let me try anything I wanted to try and they found a way to make it possible.”

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When Jordan was 14, he was named the Stollery’s first ever Champion Child and the province of Alberta’s representative to the Children’s Miracle Network, which raises money for children’s hospitals throughout North America.

The champion children from around Canada visited the House of Commons, met then-prime minister Jean Chrétien, and travelled to Disney World with their families. That trip is filed under the category of “blessings” in the Sharkey family scrapbook: Dianne and Tom stress that their family’s life has been blessed, despite the challenges they faced dividing their time between a sick infant and a healthy five-year-old.

“We lived at the hospital,” Dianne recalls. “The hospital became our family.”

Years after Jordan left the NICU, he served on the Stollery Children’s Advisory Board. Now 31, he’s aged out of pediatrics; he goes to the Grey Nuns Hospital for regular blood infusions to treat the IgG immune deficiency he developed after contracting chicken pox at age five. But, he still feels a connection to the Stollery. Earlier this year, he dyed his hair pink and then shaved it off to raise more than $1,000 for the hospital’s Hair Massacure for Cancer.

Jordan’s experience allows him to give advice to parents who right now may be going through the same things that his parents once did. “Medical treatment has improved so much that kids today have a better chance and fewer issues. [Parents will still] worry, but they should definitely pay attention to the other siblings in the family, and don’t leave them out.” What he didn’t say, but could have, is that a rough start to life doesn’t mean your path won’t smooth out. Jordan is certainly proof of that.

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Why I donate

Photo: AShlEY ChAMPAgnE

Brotherly love: hosanna has a big brother, Joe, who is a monthly donor to the Foundation.

A World of

difference

BY Colleen Biondi

There was a good chance that Hosanna would die in a Chinese orphanage. Thanks to treatment at the Stollery, she’s learning Mandarin in an Edmonton school S TO L L E RY K I D S. C O M

J

oe CroWell donates regularly to the stollery

Children’s Hospital Foundation because he believes in the work that the hospital does. He’s witnessed the hospital’s work first-hand.

When his parents, Cathy and Greg Crowell of Edmonton, were living in southwest China and doing humanitarian work in 2007, they had many goals. They would learn the language and they would help volunteers and local non-governmental organizations with educational initiatives for girls. In broad strokes, they would do what they could to improve the lives of people in their impoverished community.

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One thing they didn’t plan was an addition to their family. After rais- a hope and a future,” Cathy says. “We’re forever grateful to the many ing four children who now have children of their own (the Crowells have people who make the Stollery a safe place for our daughter. We are also 10 grandchildren and counting), they thought they were finished with grateful to the 100-plus donors who have made it possible for Hosanna parenting. But then a local friend asked if they would provide emergency to literally have life.” care for a sick infant from the community orphanage. After meeting 13Hosanna’s brother Joe couldn’t agree more. The 27-year-old resident month-old Hosanna, they fell in love. of Kelowna has the Canadian licensing rights for Ghost Armor, a comHosanna weighed less than eight pounds and had no muscle tone. pany that provides protective coatings for cell phones and other devices.

“She was skin and bones,” recalls Cathy. “She was a very sick little girl.” In 2009 his then-business partner, Brayden Risby, approached the FounAlthough the diagnosis at the time was unclear, her caregivers did know dation about making regular donations. He didn’t know then that Joe’s that any treatment she would need would likely be ongoing and expen- sister Hosanna was getting help there; he just thought it was the right sive. With so many other children to care for, it would be out of the reach thing to do. Since then, the company has donated $400 per month to of the orphanage, even if specialized the Foundation. care were available locally.

“Edmonton is blessed to have an “They sit down with donors and build The Crowells took her in as a fosorganization like the Stollery Chilthat relationship,” Joe Crowell says of dren’s Hospital Foundation,” says ter child and started treating her, the Foundation. “It is very personal.” initially for malnourishment, then Joe. “I’ve been able, fortunately and – after a misdiagnosis – for anemia. unfortunately, to see its work first “I was crushing up iron tablets but it turned out that was the last thing hand and see the smile that comes on my sister’s face when she is given she needed,” explains Cathy. A trip to a facility in a more developed com- a teddy bear or a warm and gentle touch.” munity resulted in the answer: Hosanna had Beta Thalassemia Major About two months ago, Joe met with staff from the Foundation to talk (BTM). This is a condition where the red blood cells are not able to ad- about the company’s monthly donation. “Their hands-on approach, where equately carry the necessary oxygen molecules through the body. What they sit down with donors and build that relationship, is very personal.”

Hosanna needed was oxygen-rich blood; she needed transfusions.

“I am trying to build my community,” he adds. “My product might The Crowells got permission to bring Hosanna to Canada while a not be around forever, but my sister will be.” Joe encourages other busifour-month home study was conducted to assess them as potential ness owners and CEOs to do the same. “It is rare to have the opportunity adoptive parents. Then they returned to China for the legal adoption for a 20-year investment, but that is what a kid is. Get away from your to clear. Now back in Edmonton, Hosanna’s second home is the Stol- desk, get off the phone and take a walk through the charities in your local lery Children’s Hospital where she gets her required blood transfusion community. That will give you a different perspective.” every three weeks. She has had more than 100 so far and will require Even though Joe’s company’s corporate contributions to the Foundathese treatments for the rest of her life. In addition to the ongoing care tion didn’t originally come from a personal experience, he’s learned, like Hosanna receives from her Stollery hematologist Dr. Nancy Dower and so many others, that children’s health affects us all. “My sister Hosanna the clinical team, Dr. Man-Chiu Poon, a world-renown hematologist has gone through so much. I love her, and if it weren’t for Alberta Health and researcher with the Faculty of Medicine at the University of Calgary Services and the Stollery, she probably wouldn’t be here today.” has also been a tremendous support to the Crowells. He sends them step-by-step emails about how to look after their new daughter. “He is Thank You: To view the Stollery Children’s an amazing man,” says Cathy.

Hospital Foundation’s Honour Roll, Shining Stars Today, Hosanna is doing great. She attends an Edmonton elementary and In Honours lists, visit stollerykids.com. Special school in a Mandarin language bilingual program. She is very social and thanks to Kahlan Froescul, who donated in memory loves to run, swim and play baseball with friends. of Mike Froescul but was missed in our last issue.

“Donating finances, time and blood gives children like Hosanna 34

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PHoTo: ASHlEy CHAMPAgnE

Tea Time: For three months of the year, Hannah Pillidge is the same age as her aunt Hosanna. The girls celebrate by holding annual tea parties.

corporate HERO

Roof

oveRhead

BY Caleb Caswell

Giving back to the community is part of business at Great Canadian Roofing, Siding and Windows

PHoto: InStant MEMoRIES

Rooftop Radio: Great Canadian employees participate in the Stollery’s Corus Radiothon every year. Hearing the event during its early years motivated the company’s owner Jason Knapton to become involved with the Foundation.

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W

Hat dO yOu lOOk at WHEn yOu fiRst Walk

into a house? Is it the floor plan, the colour of the walls or how much light the windows let in? You probably wouldn’t glance straight up at the ceiling, at least not as a first point of inspection, unless the roof wasn’t there at all. But you could hardly call it a house without a roof.

You can say the same about the many corporate sponsors of the Stollery Children’s Hospital Foundation who dedicate time and resources to raising money for the Foundation. Great Canadian Roofing, Siding and Windows is one business that might not spring to mind when you think about top-flight children’s medical care, but Stollery families would definitely notice if the company’s support weren’t there.

Founded in 1997, Great Canadian Group offers a host of roofing, siding, insulation, air conditioning and other services across Alberta and Saskatchewan. Jason Knapton has made it a personal mandate to raise as much money for the Stollery as possible. They’ve served as presenting sponsor for numerous Foundation events, including the Corus Radiothon since 2011, the Astral Caring for Kids Radio Broadcast since 2010, and this year’s Stollery Week on Team 1260, 100.3 The Bear and Virgin Radio.

But, the company does more than just write cheques. It puts on car washes. It motivates its sales staff to ask for donations from customers and then matches those donations up to $50. Doing this, Great Canadian has raised over $10,000 since March 2012, and the company’s annual Spencer Berezowski Memorial Golf Tournament has raised more than $200,000 for the Foundation in just four years.

It was company owner Jason Knapton who spearheaded Great Canadian’s Stollery initiative. The only reason Jason says it didn’t happen sooner is that the company is finally at a place financially where it can afford to give. “It’s tragic to hear what some of the kids go through” says Jason, “Twelve years ago it was harder to afford to substantially support charities, I would listen to stories of the kids.

But, once we were in the position to give more, it was a no brainer.”

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PHoto: AlIStAIr HennIng

Foundation. Charity has become so much a part of the corporate culture that the company is no longer content to just encourage it.

“It’s mandatory; one of the biggest questions we ask at our business meetings is ‘How are the Stollery donations doing?’” explains Jason.

“If you’re not interested in supporting the Stollery, then we probably don’t have the same values.”

Wes Cheney, general manager of the Edmonton branch, wasn’t used to this kind of corporate generosity before coming to Great Canadian, but has grown to encourage this philanthropy as part of the company’s culture. “I came from both smaller and larger companies,” says Wes. “The company I came from previously made large donations, but the staff wasn’t necessarily that involved in the process. At Great Canadian it’s not about getting our name out there; it’s about getting the staff out there.”

Recently, a girl on Wes’s son’s soccer team was admitted to the

Stollery after a horseback riding accident damaged her skull. “You see these things and you just want to give more to help the kids recover faster. It gives me peace of mind that we’re making a difference.”

And that difference has moved from the corporate level into the personal lives of staff as well. Jason has been proactive about instilling a charitable spirit in his children in addition to his employees. His son Dylan recently raised money for the Foundation through his hockey team. After talking with family, friends, and walking door to door, Dylan raised over $6,000. An impressive feat for a nine-year-old.

Both Wes and Jason recall being led through the halls of the Stollery, and seeing how their donations are put to use as an inspiring experience. “The bottom line is that it’s the most rewarding thing you’ll do as a business,” Jason explains. “It does take work and it does take some time and focus, but when you’re sitting in a Radiothon and you’re going through the children’s hospital, it makes it all worthwhile.”

Companies like Great Canadian are an essential part of what keeps the Stollery functioning. Corporate sponsorship might not be something you’re aware of when you walk through the doors of the hospital, but it’s a fundamental component that helps makes the Stollery a world-class institution. Company sponsorship to the Foundation is like building a sound roof on a home – it’s not the first thing you notice, but you sure can’t do without it.

Fund the Foundation: If you’re interested in contributing to the Stollery Children’s Hospital Foundation, visit stollerykids.com to find out how to donate.

Thank you!

PRESENTING SPONSOR

8TH ANNUAL SPENCER BEREZOWSKI MEMORIAL GOLF TOURNAMENT GOLD SPONSOR SILVER SPONSORS BRONZE SPONSORS

EVENT HOLE SPONSORS

The 8th annual Spencer Berezowski Memorial Golf Tournament Garry Ollis Accounting presented and hosted by Great Canadian Group of Companies Special thanks to: raised in excess of $63,000 for the Stollery Children’s Hospital &ŽƵŶĚĂƟŽŶ͊ /Ŷ ĞŝŐŚƚ LJĞĂƌƐ͕ ǁĞ͛ǀĞ ƌĂŝƐĞĚ more than $200,000 JSJ Bookkeeping ĨŽƌ ƚŚĞ ^ƚŽůůĞƌLJ͘ dŚĂŶŬ LJŽƵ ĨŽƌ LJŽƵƌ ƐƵƉƉŽƌƚ͊

Plain N’ Simple Catering

BY caitlin crawshaw

hospitAl portrait

The Right Move Award-winning nurse Bobbi Spady took a chance on pediatrics and has been dubbed a ‘rising star’ Alberta, Bobbi Spady considered plenty of career paths but eventually chose nursing because of the important role the occupation plays in society. “I liked the fact that I’d be able to help others and make a difference in people’s lives,” she says. At just 17, she took a leap of faith and left the family farm in Castor, for the University of Alberta’s Faculty of Nursing in Edmonton.

While some of her peers left the program to pursue other fields, nursing proved to be a great fit for Bobbi.

Through her work experience placements, she was pleased to discover that nursing was a hands-on career that involved daily interaction with people – other nurses, doctors and, of course, patients. As a student, Bobbi worked in many areas of nursing through her practicum placements, but it was her experience in pediatric cardiology at the Stollery Children’s Hospital, during her fourth year, that had the greatest impact. “I really liked working with children and their families,” she says. “Children are very resilient. They act like kids, even when they’re sick, or have a rare syndrome or a chronic illness. They’re still really happy.”

After graduating from the program, Bobbi returned to the Stollery. She was hired as a floor nurse, a position she’s held for the last two-and-a-half years. These days she works with sick kids of all ages, from babies to teens, and their families.

While some kids experience short stays at the Stollery, others are in the hospital for long periods of time, either due to chronic conditions or social reasons. In some instances, the families of patients are ill-equipped to care for them outside of the hospital and special community supports need to be organized before they’re discharged. Bobbi has found this aspect to be very different from adult nursing.

“Children change a lot quicker, medically. They can go downhill a lot faster too,” she explains. This might be because children often have multiple medical issues happening at once. At times it can be difficult seeing children so sick, but she says the job is also very rewarding. “You kind of have to weigh the good with the bad.” As a pediatric nurse, she does what she can to make the hospital experience easier for patients and their families. Often, she’s involved with educating parents about a child’s medical condition and care (which includes everything from dealing with feeding tubes to daily meds), or finding resources to help the family after their child is discharged. “The whole experience can be overwhelming for parents,” she says.

S TO L L E RY K I D S. C O M

PHOTO: WIllIAM AU PHOTOgRAPHY

As A high school student in smAll town

Bobbi is less than three years into her career, but she’s already a leader at the Stollery. Early on, she was asked to act as charge nurse – the RN who oversees a group of other nurses on a unit during a shift. She has also been a preceptor, overseeing nursing students on the unit.

Despite the fact that she obviously has the qualities that make a great nurse, she was surprised to find out she’d been nominated for the College and Association of Registered Nurses of Alberta (CARNA) Rising Star award this spring – and even more surprised when she heard her name called as the winner. The Rising Star award is given annually to new nurses who exhibit clinical excellence and commitment to the well-being of patients.

“I know it sounds like a cliché, but I was just excited to be nominated,” says Bobbi.

In the long term, Bobbi says she’d like to pursue other career options within pediatrics, like management, nursing education, or working as a nurse practitioner (for which she’d pursue additional education). But, at the moment, she’s happy where she is. “I am very lucky to work at the Stollery, helping children and families. Every day, I go to work and do something that’s rewarding and makes me happy.”

S U M M E R 2 0 1 3 | HEROES

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ILLUSTRATION: CINDY REVELL

the last word

Moments of Change For doctors, any day at the office can be a life-altering one My naMe is DoMinic cave. i aM a peDiatric carDiac intensive care doctor, but I am also a pediatric anesthesiologist; a protector of children undergoing surgery.

A large part of my work is spent anesthetizing healthy children who cry or giggle, and always wake up to go home to their families. Being that I work at the Stollery, though, it doesn’t always happen that way. The complexity of the population who we provide anesthesia for means that, though rewarding, it is often challenging to safely get a child through surgery.

My practice includes children for cardiac surgery; liver surgery; general surgery; neurosurgery; ENT surgery; orthopedic surgery; trauma; urology; plastic surgery; and many diagnostic procedures. It is an unusual mix, one I don’t think I would get anywhere else but at the Stollery.

A few years ago, because my family was clearly seeing too much of me, I went back to school to train as a pediatric intensivist.

Now my intensive care unit (ICU) work is almost exclusively in the pediatric cardiac ICU. This is where I have an opportunity to be part of something very different from my anesthesia life. Here, rather than a short, though intense, opportunity to impact a child and family’s experience, I get a much longer time to make a difference.

Sometimes, it also creates an impact which changes who I am, or who I want to be. A little over a year ago, as an anesthesiologist, I took a baby from his parents. A beautiful, perfect looking baby with an invisible, lethal twist of cardiac anatomy which marked him from his twin brother.

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HEROES | S U M M E R 2 0 1 3

I listened to him cry, then silenced him with sedation medications and a plastic tube in his airway.

Six weeks later, in the crowded complexity of the ICU, I cared for him again. He had not done well. Failed lungs, failed heart, failed kidneys. The only part of him that had yet to fail was his spirit. He still opened his eyes and stared into my soul. He still gripped my finger in his tiny hand. After so much had been done, his mother told me she could not ask us to stop.

I promised her that on the day when I saw no hope, no way to make him better, I would tell them both.

That day was today.

I sat with his parents as we made sure he was comfortable. The devices we used were hidden by carefully draped cloth. His father sat with one boy in each arm for the first and last time. He reminded me that I was there on the first day of his son’s life and thanked me for being here on the last.

Then, he took his wife’s hand and she held their infant son as I removed that breathing tube that I had placed six weeks before. He breathed gently by himself as he drew his final breaths.

Later I watched as the father helped the nurses wash and tend the tiny body. These experiences, these people, this one short life, changed me. I go home and hug my children and I contemplate. I work in a place where excellence is ordinary, where the incredible happens every day. I am good at my job and I do the best I can for my tiny patients each and every day.

But, tomorrow I promise myself that I will do better.

-Dr. Dominic Cave S TO L L E RY C H I L D R E N ’ S H O S P I TA L F O U N DAT I O N

Children’s Miracle Network ƉĂƌƚŶĞƌƐ ƌĂŝƐĞ ĐƌŝƟĐĂů ĨƵŶĚƐ ĨŽƌ local children’s hospitals across ĂŶĂĚĂ͘ dŚĞƐĞ ĨƵŶĚƐ ƐƵƉƉŽƌƚ ĐƌŝƟĐĂů ƌĞƐĞĂƌĐŚ͕ ƉƵƌĐŚĂƐĞ ůŝĨĞͲƐĂǀŝŶŐ ĞƋƵŝƉŵĞŶƚ͕ ĂŶĚ ƉƌŽǀŝĚĞ ĞdžĐĞůůĞŶĐĞ ŝŶ ĐĂƌĞ ĨŽƌ ĐŚŝůĚƌĞŶ ŝŶ ŽƵƌ ĐŽŵŵƵŶŝƚLJ͘ KŶ ďĞŚĂůĨ ŽĨ ƚŚĞ ĐŚŝůĚƌĞŶ ŝŵƉĂĐƚĞĚ ďLJ LJŽƵƌ ŐĞŶĞƌŽƵƐ ĐŽŶƚƌŝďƵƟŽŶ͕ THANK YOU!

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