Page 1

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

Where Her Heart Is THERE’S NO PLACE LIKE THE STOLLERY The Snowflake Gala sparkles once again

PM 40012957

NEVER GIVE UP An alum remembers that message every day

The Stollery will always be special to B.C.’s Muskaan Grewal

PLUS:

MEET DR. PAUL KANTOR, THE STOLLERY’S HEAD OF PEDIATRIC CARDIOLOGY


contents WINTER 2014

Stollery Family

20

12 SoRRoW aNd Joy

Departments 5

A long-time Foundation volunteer has seen and lived it all

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

14 affaIR of ThE hEaRT

6

Even as a six-year-old in South Africa, Dr. Paul Kantor knew his career would be in cardiology

11 TECh fIlES

It hasn’t been easy, but Stollery alum Bethany Schultz is recovering from her life-altering seizure six years ago

Find out about the Berlin Heart and how this little device has had such a huge impact

30 hEaRT MENdER

32 CloCkWoRk doNoRS Bernice and Howard Harrison give every month on behalf of each of their six grandchildren

foUNdaTIoNS of lIfE Extra Life results; Smile for Life; birthday giveaway; masquerade ball recap; and upcoming events

26 NEvER GIvE Up

The Stollery’s well-established VADs program attracts a top cardiology researcher for the littlest patients

ThE hEaRT of ThE MaTTER

34 CoRpoRaTE hERo

Features 16 ThE MEaSURE of MUSkaaN Before she came to the Stollery from B.C., it was uncertain that Muskaan Grewal would live long enough to receive a new heart

20 a NIGhT To REMEMbER The Foundation’s Snowflake Gala celebrated families and recognized skilled professionals while raising more than $590,000

23 bUIlT WITh bEaR haNdS One family company uses its expertise to support the Foundation year after year

28 INvolUNTaRy phIlaNThRopISTS

When one of Chemco’s own needed the Stollery, the company was quick to give back beyond its regular Foundation support

37 poRTRaIT U of A pediatric fellowship student Dr. Lannae Strueby uses stem cells to repair lung damage in premature babies

38 ThE laST WoRd Former Berlin Heart recipient Melissa Mills gives an update and shares a poem she wrote when she was on the medical device

37

Part two of philanthropy expert Mike Skrypnek’s four-part guide to giving

16 ON THE COVER: After receiving her new heart last May, life for Muskaan Grewal and her family is getting back to normal PHOTO: Stuart McCall S TO L L E RY K I D S. C O M

23 W I N T E R 2 0 1 4 | HEROES






$&

 ( $

(

&'.

- !

 # 

,    '    *  #      !(



,

       

WINTER 2014 VOL 2 • No. 1 STollERy ChIldREN’S hoSpITal FouNdaTIoN ASSOCIATE EDITOR: ALEESHA JEX PRESIDEnT & CEO: MikE HOuSE, MBA, CFRE, Stollery Children’s Hospital Foundation BOARD Of TRuSTEES ChAIR: ZAHRA SOMANi, B.Ed, MBA, Pirani Group VICE ChAIR: MARSHALL SAdd, Lloyd Sadd insurance Brokers Ltd. RiCHARd BALAN, RTA Holdings Ltd. VALERiE BERGER, ATCO Gas Ltd. JONATHAN CHiA, CA, Melcor developments Ltd. HERBERT CHui, SiF Asset Management Group inc. kEViN ERkER, Lakeside Roofing dOuGLAS GOSS, Q.C., Bryan & Company LLP NOAH JONES, BA, CFP, CLu, Sorrell Financial inc. RiCHARd kiRBy, MBA, Felesky Flynn LLP ROd MACkENZiE, Legato Resources Ltd. dR. RAyMONd MuZykA CATRiN OwEN, Calder Bateman Communications LEiGH-ANNE PALTER, MBA, Conroy Ross Partners GORdON PANAS, PCL Constructors inc. dR. wiLLiAM J. SHARuN MiCHEAL wEBB, MacLachlan and Mitchell Homes inc. 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 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 REiLLy COnTRIBuTInG WRITERS: deepti Babu, Colleen Biondi, Caitlin Crawshaw, Cory Haller, Carissa Halton, Michelle Lindstrom, Alex Migdal, Melissa Mills, Tricia Radison, Lisa Ricciotti, Mike Skrypnek

$((($)&#"#('&'"$&(#  $&(($!!&, !&#'$'%(! $)#($##$ , "$#($#

!

&)&, ( ( &+!!& #(&

 !!

!    

COnTRIBuTInG PhOTOGRAPhERS AnD ILLuSTRATORS: Alberta Health Services, Ashley Champagne, Paula Gibson Griffith, Buffy Goodman, Alistair Henning, debbie Hockett, Stuart McCall, Memories Photography, Heff O’Reilly, Lisa Rebnord, kelly Redinger, Amy Senecal, Colin Spence, Nicki wohland aBouT ThE STollERy ChIldREN’S hoSpITal FouNdaTIoN The Stollery Children’s Hospital Foundation is committed to funding excellence at the Stollery Children’s Hospital. Excellence comes in many forms: specialized equipment; sub-specialty education to train the brightest medical minds; research to pave the way to the discovery of new treatments or cures; and specialized pediatric programs that enhance family-centred care, and patient and family outcomes at the Stollery. Content may not be reprinted or reproduced without permission from the Stollery Children’s Hospital Foundation.

HEROES is published for the Stollery Children’s Hospital Foundation by Venture Publishing inc., 10259-105 Street, Edmonton, AB T5J 1E3 Tel: 780-990-0839, Fax: 780-425-4921, Toll-free: 1-866-227-4276 circulation@venturepublishing.ca Printed in Canada by Burke Group of Companies Limited. Heroes is printed on Forest Stewardship CouncilŽ 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 Heart of the Matter PHOTO PROVIDED BY THE STOLLERY CHILDREN’S HOSPITAL FOuNDATION

BY mike house, mbA, CFre President & CEO, Stollery Children’s Hospital Foundation

FebrUAry Is heArT mONTh IN CANADA, and this has got me thinking. It would be impossible for us at the Foundation to exist without heart. I’m not talking about the vital organ that pumps blood to other parts of the body to ensure we can take the next step. I’m talking about the intangible, but just as vital, emotion that drives everyone who is involved with the Foundation to give in some amazing and surprising ways. Over the past few months. I’ve seen some almost indescribable moments that are a direct result of the caring and giving nature that exists within all of us. Most recently, I had the pleasure to receive hugs from donors, patients, families, volunteers, sponsors, media personalities and hospital staff all in a single morning. I love my job! Corus Radiothon is one of those magical moments in my career where I get to connect with the people who wear their hearts on their sleeves for 48 hours and bring Stollery family stories to life through the magic of radio. This event has a proud history in our city; one that stretches back 15 years and continues to make our hearts soar through the courage and bravery of our Stollery Kids. One person who comes to mind is 12-year-old Emma Nagal – the only known person in the world with two rare and debilitating diseases; one that affects her muscles making it difficult for her to walk, and a rare genetic S TO L L E RY K I D S. C O M

disorder that prevents her body from converting fatty acids into energy. Despite that, Emma exudes positivity and radiates a certain strength that leaves me in awe. Then there’s Braden Mole, who has been a patient at the Stollery since he was three. Four brain surgeries later and Braden is a healthy, happy and successful 22-year-old philanthropist who now works as part of my team and is only $40,000 away from reaching his personal goal to raise $1 million for the Foundation. Go Braden! February is also the month where each year more and more Albertans are seen sporting pink hair leading up to the day that is synonymous with the heart – Valentine’s Day. Hair Massacure is arguably the biggest hair-pinking and head-shaving event in the world, and it thrives in Alberta. The Foundation is privileged to partner with Make-A-Wish® Northern Alberta and Ronald McDonald House® Northern Alberta to ensure Hair Massacure continues to support kids with life-threatening illnesses. We are working with hundreds of schools, salons, volunteers and sponsors to show what it means to give from the heart, support the ones you love, and commit to a cause that is both personal and transformational. The decision to shave one’s head is not easy for most people. Whether this is your first dye job or your 12th time going pink, I applaud those of you who commit with all your heart and soul by participating in Hair Massacure. Speaking of transformation, the Stollery Children’s Hospital continues to be on the leading edge of research and discovery when it comes to advancements in pediatric cardiac care. In fact, the Stollery is one of only three centres in Canada that provides neonatal and pediatric Extracorporeal Life Support. This life-saving heart/lung bypass procedure saves lives when a child’s heart is either failing or slow to recover following surgery. The Stollery is also home to the Western Canadian Children’s Heart Network, providing more than 600 cardiac surgeries each year. Perhaps the best place to see the power of a giving heart is with the healthcare professionals who care for patients and their families. With every journey a child takes at the Stollery, there are teams of experts who ensure that excellence in patient and family centred care is at the heart of what they do. For them, and for us at the Foundation, our passion for healthy outcomes for kids drives us to be better every day. This is not by chance – it is by choice. As you enjoy reading about the latest Stollery news and accomplishments, please know that we are grateful for all you do and what you share in your heart for kids who need it most. Thank you and have a happy and healthy spring. W I N T E R 2 0 1 4 | HEROES




foundations of life

More than a Game On nOveMber 3, GaMers frOM arOund edMOntOn caMe

teaM LeaderbOard:

together and raised $106,086 for the Stollery Children’s Hospital Foundation through the Extra Life video game marathon, an event that the Children’s Miracle Network proudly partners with. In total, 358 registered gamers played their hearts out, some for over 24 hours straight, bringing in the second highest Extra Life total in Canada. This was the second straight year for Extra Life Edmonton and participants stocked up on pop and pizza to ensure they had the stamina to make it through the marathon. Congratulations to everyone who participated in or donated to Extra Life.

➊ Extra Life Edmonton -$42,000 ➋ Team GetWaved - $4,500 ➌ David’s Team of Awesome! - $3,650 ➍ Do a Barrel Roll 4 Kids - $3,500 ➎ Strathcom Media - $3,200

PHOTOS PROvIDED BY THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION

Be a Hero: For more information on Extra Life, or to register or donate for next year’s event visit extra-life.org.

SORE THUMBS: Edmonton Mayor Don Iveson was one of the hundreds of gamers who came out to support the Stollery through the Extra Life gaming marathon last November.



HEROES | W I N T E R 2 0 1 4

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


Behind the Mask

THE GIfT of GIvInG

PHOTO PROvIDED BY DEBBIE HOCKETT

Debbie Hockett had always wanted to hold a Masquerade Ball. Several years ago, when she was booked for a family portarit photo session, she met a special little girl who would inspire her to do just that. Six-month old Daphne desperately needed a new liver. “She was a special little girl,” Debbie recalls. “She was very sick but she smiled like it was nobody’s business. She certainly gave me warm fuzzies inside and I thought it would be nice to do something for the Stollery since they were the ones helping her.” Since then Debbie has held two Masquerade Balls, both at the Ramada Inn, and raised $10,000 for the Stollery Children’s Hospital Foundation. The evening includes dinner, dancing, a silent auction, a 50/50 draw and, of course, some of the best attire you’ll see in Edmonton. “I’ve heard a lot of positive feedback,” Debbie says. “My biggest critic is always my father and both years I received letters from him telling me how proud he was. Everything’s always gone great and I’m excited for next year’s event.” If you’re interested in attending the third annual Masquerade Ball fundraiser this coming October, be sure to check out tixonthesquare.ca later in the year for more information and to purchase tickets. CHARITABLE MASQUE: Debbie Hockett’s second annual Masquerade Ball raised $10,000 for the Foundation.

PHOTO PROvIDED BY THE STOLLERY CHILDREN’S HOSPITAL FOuNDATION

As An event plAnner And A professionAl photogrApher,

PRoUD PAREnTS: Jason and Mandy Hadfield were overjoyed when their daughter Ava told them she wanted to help the Stollery.

on december 18, 2012, AvA hAdfield wAs three years old and undergoing surgery to remove a tumour from her brain. The following summer she attended Little Everest through the Stollery and, with her birthday around the corner, came up with the generous idea of collecting donations for the Stollery Children’s Hospital Foundation instead of presents. “She told us she wanted to give back to the Neurosurgery Kids Fund,” recalls her father Jason. “My wife and I had talked about doing something like this but we were quite surprised when Ava beat us to it.” So, when August 15 came and Ava turned four, she collected $2,320 for the Foundation. “It was quite heartwarming,” says Jason. “All of our friends and family were on board and we couldn’t be more proud of Ava for being so selfless.”

looKing for A wAY to give bAcK? visit stollerykids.com/ways-to-give for a few ideas.

The Perfect Smile it All stArts with A smile. everY YeAr between mArch And June, dentists at West Central Dental and Wetaskiwin Dental use their talents to raise money for the Stollery Children’s Hospital Foundation through the Smiles for Life program. During these months, every cent patients pay for teeth whitening goes to children’s charities, with 50 per cent going to the Smiles for Life Foundation and the other 50 per cent going through a local charity of the clinic’s choice. And, for the last three years that choice for Dr. Tim Mahoney at Wetaskiwin Dental has been the Stollery Children’s Hospital Foundation. “The Stollery is a very valuable addition to our community,” he says. “Patients are always pleased to hear where their money is going. It really is win-win; they get whiter teeth, a tax receipt and they get to support a great organization like the Stollery.” S TO L L E RY K I D S. C O M

W I N T E R 2 0 1 4 | HEROES




foundations of life

PHOTO PROvIDED BY AMANDA MATTERN

The Champion Returns Cheyanne Mattern, this year’s ChaMpion Child, presented by Walmart, returned to Edmonton after the trip of a lifetime. Cheyanne, along with hundreds of other Children’s Miracle Network Champion Children from across North America, got the chance to visit Walt Disney World in Orlando. Cheyanne and her family also spent time with the Canadian Champion Children in Toronto before heading to the Magic Kingdom. Heroes caught up with Cheyanne to chat a little bit about her trip.

Q: What was it like meeting all the other Champion Children from across north america? Cheyanne: It was really good. I had fun and everyone was friendly. We all sat at tables and traded pins with each other.

Q: What did you do when you were in toronto? Cheyanne: Walked around a lot. We went to museums, had dinner and tea. It was a lot of fun.

Q: Was this your first time at Walt disney World? Cheyanne: Yes it was. I went on so many rides. Q: What was your favourite ride? Cheyanne: The Haunted Mansion was really, really fun. Q: What was the best part of the trip? Cheyanne: Definitely all the rides. There was also a medal ceremony for

Mayfield Toyota Gives Back Event it really is the best deal in toWn. for the seCond year in a row, Mayfield Toyota Scion raised $10,000 for the Stollery Children’s Hospital Foundation through the Mayfield Gives Back Event. From July 18 to July 20, a major portion from every single vehicle sale went to the Foundation. David Friesen, Mayfield Toyota’s general manager, says the Mayfield Gives Back Event has become an important part of the company’s culture and staff are already looking forward to this summer’s fundraiser. Throughout the three-day event, everyone at the dealership worked extended hours and the company held a pancake breakfast for customers, collecting donations on behalf of the Foundation. Congratulations to Mayfield Toyota Scion.

in the driVer’s seat: For more information on the Mayfield Gives Back event visit mayfieldtoyota.com/dcm/mayfield-gives-back. 

HEROES | W I N T E R 2 0 1 4

FAB FOUR: Over the past three years, KBR and its management team, along with Local 488 union members, have donated $35,000 to the Stollery Children’s Hospital Foundation. Here, the union’s James McFarland and vance Mathison along with KBR FAB-SHOP’s Garry Geiger proudly present the Foundation’s Lori Finck with this year’s donation of $10,615.

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 PROvIDED BY THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION

all of us that I really liked.


Kick Off Over the years the Ken Atterbury Memorial Tournament has grown into one of the largest soccer fundraising tournaments in the region. In 2013, the pre-season indoor tournament raised $18,000 that was split between the Stollery Children’s Hospital Foundation and the Alberta Diabetes Foundation. Leanne McCarthy, communications coordinator with the Edmonton and District Soccer Association, says that every year there is a waiting list for teams to get into the tournament and the entry list needs to expand in order to accommodate demand. “People are always really eager to be a part of the Ken Atterbury Memorial Tournament,” she

says. “Teams get excited because of the great causes that it supports and it’s also a great way for players to transition into the indoor game after the outdoor season wraps up.” The majority of funds raised from the massive tournament – in 2013, 117 teams played a total of 202 games over the course of two-and-a-half weeks – come from all of the referees donating their time, saving the organizers thousands. “The referees do this out of the goodness of their hearts,” Leanne says. The money raised goes to the Alberta Diabetes Foundation because of the Atterbury family’s connection to the organization, but Leanne says the Stollery was chosen because of its important role in the community. “It’s such a good charity,” she explains. “It’s one that literally everyone can get behind.”

PHOTO PROvIDED bY THE STOLLERY CHILDREN’S HOSPITAL FOuNDATION

Toques & Mitts

Sign of the timeS: To help ensure Stollery patients and families can find the right entrance in case of an emergency, the Stollery Children’s Hospital has added a new sign at its emergency entrance.

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

W I N T E R 2 0 1 4 | HEROES



PHOTO PROvIDED bY THE STOLLERY CHILDREN’S HOSPITAL FOuNDATION

the tOques and Mitts GOlf tOurnaMent cOntinues tO grow each year raising more money for the Stollery Children’s Hospital Foundation. The third annual tournament, which is put on by Ja-Co Welding and ATb Financial - Leduc took place once again at the Red Tail Landing Golf Club on September 22 and raised an amazing $120,000 for the Foundation. This total surpasses previous years and will go toward bringing Child Life into the Stollery’s Pediatric Emergency Department. The Child Life department helps children and families adjust to and understand hospitalization, illness and treatment. Child Life Specialists are child development experts who promote effective coping through play, selfexpression activities, and age-appropriate medical preparation and education. One aspect of teaching and preparing children for medical treatments and procedures is through medical play. On behalf of the 2013 Toques and Mitts Committee, thank you to all of our auction donors, successful bidders, as well as the many sponsors and participants who make this gift possible, all in the name of children’s health. Thank you to Ja-Co Welding and ATb Financial - Leduc and congratulations on another successful tournament.


foundations of life

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.

Stollery Ski Day Date: February 15, 2014 time: 9 a.m. to 5 p.m. location: Rabbit Hill This event features skiing, snowboarding, a BBQ, bake sale, snow shoeing, and an ice slide. Proceeds from the BBQ and bake sale, as well as $1 from each lift pass sold, will be donated to the Foundation. For more information contact Rabbit Hill at 780-955-2440.

hetlinger taekwon-Do invitational Date: March 15, 2014 location: Clear Vista School, Wetaskiwin Hetlinger TKD Schools are hosting an annual open tournament to Unified Taekwon-do International members throughout Alberta and Saskatchewan. Proceeds from the concession stand will be donated to the Foundation. For more information visit hetlingertkd.com.

StanD Up for love Date: May 3, 2014 time: 6 p.m. location: Ellerslie Road Baptist Church Come out to the Fifth Annual Stand up for Love (SUFL) benefit concert. All proceeds go towards the Pediatric Neurosurgery Fund at the Stollery Children’s Hospital. It will be an evening full of amazing talent with a 50/50 draw, a photobooth sponsored by VIBE, a concession, and SUFL t-shirts! Visit standupforlove.ca or email standupforlove316@gmail.com for more information.

Merriott kiDS of CoUrage triathlon anD aDUlt triathlon/DUathlon Date: May 11, 2014 location: Tri Leisure Centre, Spruce Grove The Merriot Kids of Courage Triathlon and Adult Triathlon/Duathlon is a community event supporting healthy, active lifestyles hosted by Merriott Fitness. The Kids of Courage distances are much shorter than those in adult triathlons and geared to individual ability. Most kids are fit enough to finish a Kids of Courage Triathlon successfully and have fun at the same time. All donations go to the Stollery Children’s Hospital Foundation. For more information or to register please visit merriottfitness.com.

Dirty BirDS Charity hoCkey toUrnaMent 4th annUal heart of glee Date: March 20, 2014 time: 7 p.m. location: University of Alberta Myer Horowitz Theatre Edmonton Catholic Schools has embarked on a journey with students hosting the Fourth Annual Heart of Glee event. Students from various junior and senior high schools will be performing. Please contact Cheryl at cheryl.shinkaruk@ecsd.net or 780-989-3019 for tickets or more information.

Merriott CoMMUnity ringette toUrnaMent

10

Date: May 23 and 24, 2014 location: Average Joe’s All-Star Bar, Sherwood Park and Argyll Plaza Arena, Edmonton Dirty Birds Charity Hockey Tournament is a two-day event supporting the Pediatric Neurosurgery Fund at the Stollery Children’s Hospital. Join us on May 23 at Average Joe’s for a silent auction, then join us on May 24 at Argyll Arena to cheer on the hockey teams, enjoy kid’s activities and have a snack. For more information contact Melissa at melissadasilva@shaw.ca or 780-406-4030.

Stephie’S Bike toUr

Date: April 26 and 27, 2014 location: Leduc Recreation Centre

Date: May 25, 2014 time: 9 a.m. location: Multiple Fort Saskatchewan starting points

Welcome to the Merriott Event Series. Join us for our First Annual Community Ringette Tournament. This event allows family and friends to join in on the fun! Visit merriottfitness.com to register or find out more information.

The Fourth Annual Stephie’s Bike Tour for the Stollery starts and finishes in Fort Saskatchewan. This event is about fun, family, and healthy active living while giving back to the Stollery Children’s Hospital Foundation. Visit stephiesbiketour.com for more information.

HEROES | W I N T E R 2 0 1 4

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 Jordan Wilkins

tech files

A Holiday for the Heart The Berlin Heart gives small children time when waiting for a transplant The Berlin hearT may have Been

ILLuSTRaTION: COLIN SpENCE

developed in Germany, but some of the most predominant moments in the device’s history happen at the Stollery Children’s Hospital. Stollery Kids David adomako-ansah and Melissa Mills both made headlines after being implanted with the artificial heart; David for living the longest with the Berlin Heart for 22 months and Melissa for being the first ever patient to have the device removed without receiving a heart transplant (hear more from Melissa on page 38). Dr. Holger Buchholz, the Stollery’s director of the pediatric artificial heart program, got to know both David and Melissa very well, just like the other 33 Berlin Heart recipients he’s seen since coming from Germany in 2005 when he oversaw the Stollery’s first implant. “The Berlin Heart was huge for pediatric cardiology,” Dr. Buchholz says. “Before, the only comparable device

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

was a kind of heart-lung machine (ECMO) and children could only live on it for 10 to 20 days. With the Berlin Heart, suddenly there was an option if no hearts were immediately available for transplant.” The Berlin Heart is a pediatric ventricular assist device (VaD) that vibrates rhythmically and assists patients whose hearts cannot pump enough blood on their own. The device consists of one or two air-driven blood pumps – depending on whether the patient needs single- or biventricle support – and small cannulas that connect the pumps to the atrium or ventricle and to the large arteries. Dr. Buchholz says it generally takes between four and five hours for a surgeon to implant the Berlin Heart and, except for in rare cases, the device remains on the patient until a new heart is available. almost immediately this device increased the quality of life for children waiting for heart transplants, but Dr. Buchholz, who travels to hospitals around the world educating other doctors about the Berlin Heart, says this VaD didn’t immediately become the medical standard. The first ever implant was in Germany in 1990 but even after more than a decade of successful results it wasn’t until 2004 that a North american child was able to benefit from the technology. Doctors at Stanford university knew about the Berlin Heart’s success in Europe and in an emergency situation applied for a ‘’humanitarian device exemption” from the Food and Drug administration, which is not a full approval, but a special arrangement when there is no alternative. The implant was a success, became a cover story on The New York Times and the rest is history, Dr. Buchholz says. Since then the Stollery, which is one of five centres in Canada that can administer the Berlin Heart, has implanted several each year. advanced technology has led to more VaDs available to doctors and patients – today many are even less intrusive than the Berlin Heart – but Dr. Buchholz says the Berlin Heart is still the only choice for children who weigh less than 15 kgs. Children no longer leave the hospital with a Berlin Heart (other VaDs are used in these situations) but their stay isn’t limited to the intensive care unit like it would have been before the device existed. This allows children to rehabilitate and prepare while they wait for a transplant. ultimately, Dr. Buchholz says the Berlin Heart isn’t a longterm solution like a transplant, but it does provide the next best thing for the Stollery’s smallest patients. “It gives the children time,” he says. “The Berlin Heart is like a holiday for the heart.” W I N T E R 2 0 1 4 | HEROES

11


BY Carissa Halton

volunteer Hero

PHOTO PROvIDED BY SUSAN TARLINg

NEVER FORGOTTEN: Susan Tarling continues to volunteer for the Foundation to honour her son Brandon who passed away at age three.

Sorrow and Joy A long-time Stollery Foundation volunteer has seen – and lived – it all

Six yearS after Stollery foUNDatioN volunteer Susan Tarling’s son Brandon died, she received a phone call. The voice on the other end invited Susan and her husband, Andrew, to a Red Deer hospital. Newborn twin girls had been born and their birth mother had chosen the Tarlings as adoptive parents. Every year since Brandon’s death from a rare disease called Leigh’s Syndrome, Andrew and Susan have travelled to Tofino, B.C. on August 29. They go to remember their son’s life. They remember the three-and-a-half years he fought to live. The way he taught them to love one another, to always persevere, to never give up, to accept that which they cannot change. He taught them that life should be measured in memories and not years. 12

HEROES | W I N T E R 2 0 1 4

As an infant, Brandon showed signs of something terribly wrong: he didn’t have any muscle tone, he couldn’t focus on people, his body was often unable to fight infections like colds and flu. When he was 10 months old, Brandon was diagnosed with Leigh’s Syndrome, a rare neurological condition. “Picture a city running at 25 per cent of its power; that was Brandon’s body,” explains Susan. “Basically, he had no muscle tone and couldn’t eat by mouth; he couldn’t see or hear. The communications between his brain and his body were not working.” Even before his diagnosis, the Tarlings spent almost three months at the Stollery Children’s Hospital. “I was able to stay at his side while he was in hospital and that was very comforting. The sleeping arrangements are way 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 PROVIDED BY SUSAN TARLING

FAITH, HOPE & LOVE: Susan and Andrew Tarling adopted Sarah Faith and Emma Hope six years to the day after their son Brandon’s passing. better than a cot. It’s almost like a bed, with drawers underneath and a “Every year, it’s now our ‘night out’. We get dressed up and volunteer in cushion on the top. If he had any issues throughout the night, I could attend his memory.” to him,” Susan says. “The nurses are so nice. One night, Brandon cried nonFrom there, they began to volunteer with other Stollery initiatives – with stop from the time we got to hospital to midnight. A nurse came in and told the more casual Cotton Club at Edmonton Marriott at River Cree Resort, the me to go to sleep and that she would take him for me.” The nurse walked Corus Radiothon, and even helping in the Foundation’s office. him through the hallways in his stroller as Susan finally slept. On August 29, 2007 when he was three-and-a-half years old, Brandon “It doesn’t feel like an institution. I knew he was getting the best help he died. Susan continued to volunteer, bravely sharing Brandon’s struggle and could have,” says Susan. her family’s story with listeners during the 2010 Corus Radiothon. When Brandon was finally diagnosed, they were told that he probably “Brandon wouldn’t have lived as long as he did without the Stollery. wouldn’t live to see his first birthday, Volunteering is my way of giving so when that day came, the Tarlings “He was our end all and be all,” Susan back,” says Susan. “I wish people threw a huge party. would do it more. Even if you can’t says of her son Brandon. “There was Brandon continued to defy the afford to donate financially, you can nothing else in our life but him.” disease – he had a second birthday, donate your time.” then a third. He even went for long Fast forward to the summer of stretches of time without hospital stays. Susan and Andrew made it their 2013. Their trip to Tofino to remember Brandon was to be no different than priority to help him live as long as he could and to enjoy the time they had any other. Susan had taken vacation time. They’d booked their flights. They with him. “He was our end all and be all. There was nothing else in our life were packing when their adoption agency called. but him,” says Susan. They’d had their names on the agency’s waiting list for almost a year and Somehow, Susan found time to begin volunteering for the Stollery Chil- had tried to “live like nothing was happening.” But when the call came, dren’s Hospital Foundation. She was inspired when their whole family was everything changed. sponsored to attend the Snowflake Gala. “It was very glamorous,” she re“We got the call on August 27 and were told that twins were ready to be calls. “Our tuxedo rentals were donated, even for Brandon, and we had our picked up on the 28th.” So, instead of packing for Tofino, they spent a blur own table. There were celebrities, hockey players, newscasters – the who’s of a day buying car seats, cribs, and clothing. who gets to go and it made us feel very special.” Then, because of legal complications, the adoption was postponed to the After that night, Susan and her best friend decided to regularly volunteer next day. Serendipitously, their adoption of Sarah Faith and Emma Hope bein honour of Brandon. Usually they work the featured silent auction table. came official on August 29, six years to the day after Brandon’s death. S TO L L E RY K I D S. C O M

W I N T E R 2 0 1 4 | HEROES

13


MEET THE specialist

Affair of the

HeArt BY Lisa Ricciotti

d

R. PauL KanToR is a Man of MoTion. THE diREcToR

of pediatric cardiology at the Stollery Children’s Hospital walks quickly, talks quickly and thinks quickly, too. Almost before a question is finished he’s into his response, delivering it rapidly but articulately in the clipped cadence of a South African accent still recognizable after nearly three decades away. It’s the end of a long day for Dr. Kantor and he’s agreed to put himself on pause long enough to talk about his relatively recent return to Edmonton. He arrived at the Stollery in September 2012 from the Hospital for Sick Children in Toronto and judging by the almost Spartan appearance of his office, he hasn’t yet settled in. Clearly he doesn’t spend much time behind the large desk; its surface swept clean of papers, files and typical workday clutter. His first go-round in Edmonton was as a researcher. From 1996 to 1998 he investigated the cardiac metabolism of heart failure under Dr. Gary Lopaschuk at U of A’s Heritage Medical Centre. Now, nearly two decades later, he’s come back to head up the Stollery’s heart program. In his time away from Edmonton, he’s moved many times in a career marked by forward momentum. Having completed his initial medical training in South Africa, he chose to leave his home country behind to pursue pediatrics in New York City. Then, to satisfy permanent residency requirements, he headed to Canada, spending two years in Saskatoon as a family doctor. Next up: pediatric cardiology training at B.C. Children’s Hospital in Vancouver and that research stint in Edmonton followed by his first staff position at McMaster’s Children’s Hospital in Hamilton in 1999. He achieved several upward promotions in Steeltown, then moved a short skip around Lake Ontario to Toronto. 14

HEROES | W I N T E R 2 0 1 4

PHOTO: KELLY REDINGER

Even as a six-year-old boy in South Africa, Dr. Paul Kantor knew his career would be in cardiology. Today he heads the Stollery’s heart program

Although he’s covered a lot of geography, Dr. Kantor candidly shares that of all his moves, his recent relocation to Edmonton was the most difficult. First, it wasn’t easy to leave Sick Kids, where he founded and led a heart function and cardiomyopathy program for eight years. It was also difficult on a personal level. “It’s harder to move as you get older because you lose a lot of connections and I do feel that acutely,” he says. Yet stasis has never suited him and Dr. Kantor doesn’t regret coming to Edmonton, and he acknowledges that this move may be his last. More than a year into his new position, he realizes what the Stollery offered was irresistible – the opportunity for new personal challenges coupled with the chance to give back. “When you’re in mid-career, you either decide to do something dramatic, hoping to make more of a difference for people, or you stay where you’re comfortable,” he explains. “I chose to take myself out of my comfort zone so I could share what I’ve learned and try to do something better than I have already. If I can leave things better at the Stollery than when I started, I’ll consider that a success.” Not surprisingly, the mobile Dr. Kantor realized he didn’t like the idea of sitting in the same position until retirement. Yet it’s more than ambition that drives him. A man with a mission, he’s one of the few blessed with knowing exactly what he wanted to accomplish from an early age. In 1967, as an impressionable six-year-old with a keen interest in biology and all things medical, he sat riveted to the telly watching coverage of a historical event that shocked and amazed the world – fellow South African Christiaan Barnard had performed the first-ever human-to-human heart transplant. Three years later he devoured One Life, the surgeon’s best-selling autobiography and set his mind on following his fascination with the heart. 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


ACE OF HEARTS: Dr. Paul Kantor, the Stollery’s head of pediatric cardiology, takes a few minutes with us to explain all the new treatment options for pediatric heart disease.

After medical school, he found himself walking in Barnard’s footsteps: post-graduate training at Groote Schuur Hospital in Cape Town, the site of Barnard’s seminal surgery, and later cardiovascular research in a building that bore Barnard’s name. And now he’s at the Stollery, one of the best pediatric heart transplant centres in North America. He’s stayed true to his love affair with the heart, but as his career in cardiology progressed, Dr. Kantor realized that unlike Professor Barnard, his particular contribution would not be in heart transplantation. Instead he discovered his true niche while at Sick Kids, where he wrestled with the reality that little was known about how to help children with heart failure. “Few of us had thought about what could be done with hearts that continue to fail after corrective surgery fixes ‘plumbing’ issues like holes and unusual anatomy,” he says. “I saw the terrible sense of hopelessness in children and their families, where there was nothing we could offer short of a heart transplant. I decided then that I needed to find a real area of specialization where I could make a difference by increasing knowledge of how to treat pediatric heart failure.” Dr. Kantor was given that opportunity at the Hospital for Sick Children, when he set up a program devoted to developing expertise, research and clinical care specifically for heart failure in children. “Many times we were able to save children who I think would otherwise have died,” he says. “And now I want to do the same at the Stollery, by starting a similar program here.” Dr. Kantor has wasted no time putting things in motion to achieve this goal. In November 2013, the Stollery launched the Cardiomyopathy and Heart Function (CHF) service, with five cardiologist physicians, a nurse practitioner and a clinical fellow. S TO L L E RY K I D S. C O M

Take particular note of the name—it’s heart function, not heart failure service. More than semantics, it’s a positive reminder that new treatment options now exist for pediatric heart diseases such as cardiomyopathy, genetic and metabolic abnormalities, and neuromuscular disorder, all previously classified as heart failure. In fact, Dr. Kantor wants to stop describing these conditions as heart failure entirely. “We never use that word in front of patients and families and we try not to use it ourselves either when describing the condition. Heart function is more appropriate these days than saying heart failure.” Although he’s tremendously proud of the Stollery heart transplant program, Dr. Kantor yearns to see the day when replacing a heart becomes a tool in a doctor’s back pocket that’s used only if nothing else is working. He points out that only a small number of children at the Stollery have a heart transplant, and that all the other pediatric heart patients need appropriate care, too. Ironically, the man inspired to pursue a career in cardiology by the world’s first heart transplant dreams of a post-Barnard era when the increasingly common surgery will keep its last-resort status. “We aim to avoid heart transplants for most of these children,” he says. “Today’s real challenge is learning more about how to reverse damage to a heart instead of replacing it. Our goal is turning heart failure into heart recovery.” Where he once saw only helplessness, today Dr. Kantor sees hope. “I choose to focus on heart function because I never again want to tell a parent that there’s nothing more we can do,” he explains. “I want to stop wondering, ‘couldn’t we possibly have done something better?’ Now my conviction is, we can.” Those days are still ahead, Dr. Kantor admits but just give him a bit more time. Every day brings him closer to his goal. W I N T E R 2 0 1 4 | HEROES

15


TUG AT YOUR HEART STRINGS: Muskaan Grewal’s HeartWare pump helped save her life. She is the youngest patient in the world to ever receive the device.

16

HEROES | W I N T E R 2 0 1 4

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


feature HERO

The Measure of

Muskaan bY Alex Migdal

That Muskaan Grewal needed a new heart was certain. Whether she’d be alive long enough to receive it was less so

PhOTO PROvIDED bY ALbERTA hEALTh SERvICES

F

iRst HER bREAtH quickEnEd. tHEn sHE stOppEd

EvERy tiME tHE pHOnE Rings, dR. HOlgER bucHHOlz’s

drinking milk. Finally, her lips turned blue. heart rate shoots up. Only 10 days old, Muskaan Grewal had been settling into her He’s the go-to person when all options have been exhausted and a new home in Surrey, B.C., with her father, Harman, her mother, child with a failing heart is too sick to wait for heart transplantation. Sukhjit, and her six-year-old sister, Karina. The initial health she had When he first meets his patients, they’re children in an extremely radiated at birth began to fade. Worried, Muskaan’s parents took her to fragile condition. the family doctor. He suggested they bring her to the emergency room; Dr. Buchholz is the director of the Stollery’s pediatric artifisomething was wrong with her heart. cial heart program. He studied cardiovascular surgery in Germany Doctors admitted Muskaan to the intensive care unit, where she and was flown in by the Stollery in 2005 to help implant its first underwent hours of testing. Her Berlin heart, the world’s first mechfamily gathered in the waiting anical heart designed for children. a five-year-old was being flown room, certain that they would be Months later, he was asked to lead in from B.C. she had just suffered greeted with welcome news. Then the Stollery’s ventricular assist a cardiac arrest and needed a the doctor came out. device (VAD) program. ventricular assist device. “Her heart is like a nut and it’s A VAD is a mechanical pump not pumping enough blood,” Harthat supports a damaged or failing man recalls hearing from the doctor. She suffered from a rare heart con- heart by circulating blood throughout the body. Dr. Buchholz oversees dition called dilated cardiomyopathy that affects one in 100,000 live about 10 pediatric patients per year, most of whom are treated with a births each year. It was a foregone conclusion: Muskaan would need a VAD until they are able to receive a heart transplant. This approach acts new heart. as a bridge to transplant that ensures their survival while they wait for “There are no words coming out. No sentences. Nothing,” Har- a donor heart. man says. “We were just staring at each other and crying and shaking Implanting a VAD allows the patient’s organs to grow healthier, ourselves.” meaning less time in the hospital and reduced admission rates. Most Life suddenly felt fragile for the Grewal Family. They no longer knew importantly, the patients are in better condition when they undergo how to measure Muskaan’s life. In years, months, weeks or hours? heart transplantation, shortening their recovery time.

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

W I N T E R 2 0 1 4 | HEROES

17


PHOTO PROvIDED bY ALbERTA HEALTH SERvICES

DREAM TEAM: Thanks to the skilled care of Dr. Ivan Rebeyka, chief of pediatric cardiac surgery, Dr. Holger buchholz, director of the pediatric artificial heart program and Selvi Sinnadurai, vAD program coordinator, Muskann Grewal’s life is getting back to normal. When Dr. Buchholz started at the Stollery, the VADs were The docTors Told Them To prepare for anyThing, restrictive and bulky, connected to controllers as big as refrigerators. so Harman and Sukhjit learned to live day by day. Following the news of Muskaan’s condition, they uprooted The risk of complications for patients was high and their quality of life was reduced because of the restrictive medical equipment. But advan- their lives to Toronto so that doctors could sample medications ces in medical technology in the past two years have led to a new form on Muskaan. She gradually responded to the treatment, and w i t h i n m o n t h s, t h e f a m i l y of long-term, permanent treatment returned home. called destination therapy, meant In 2011, the Stollery was the first A s s h e g r e w, M u s k a a n ’ s for patients who aren’t suited for a centre in Canada to implant a anxiety was crippling. When heart transplant. doctors approached her, she That’s largely thanks to the HeartHeartWare pump in a pediatric started to vomit. The smell of Ware pump. It’s no bigger than a patient. The 13-year-old patient wore would set her off and she golf ball and can be implanted in the four-pound controller in a carrying food would lock herself in rooms, patients that weigh more than 20 case strapped to her back. refusing to come out. kilograms, typically at five or six But each passing day marked a years of age. In 2011, the Stollery was the first centre in Canada to implant a HeartWare pump in a pediat- better chance at a heart transplant. The wait, however, proved too ric patient. The 13-year-old patient wore the four-pound controller in a long. At the age of five, Muskaan suffered a heart attack. Her parents performed CPR and rushed her to the B.C. Children’s Hospital. She carrying case strapped to her back. Knowing his patients could return home helped alleviate some of was already on a 24-hour medicine called Milrinone that helped Dr. Buchholz’s stress. But the distance brought a new host of problems. her heart pump blood. It was the last resort for the transplant. Doctors told the family they would need to fly to Edmonton. Would patients get the help they needed in case of an emergency? It was there they met Dr. Buchholz and Selvi Sinnadurai, the Stol“If something bad happens, it doesn’t happen on Tuesday morning at lery’s VAD program coordinator. (Dr. Buchholz refers to himself as 11 a.m. It happens on Sunday at 1 a.m.,” he says. So, it was inevitable that the phone call in August 2012 would come in the famous one, but it’s Selvi who does all the work, he jokes.) Together with Dr. Buchholz, Selvi helped the Grewal family the middle of the night. A five-year-old patient was being flown in from B.C. Children’s Hospital. She had just suffered a cardiac arrest and needed a through the extensive consultation process. They narrowed their options down to two devices: the bulkier Berlin Heart and the device immediately. Her name, Buchholz learned, was Muskaan Grewal. 18

HEROES | W I N T E R 2 0 1 4

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


two children, showing off her toothy smile. The purple butterfly wings she wore hinted at a metamorphosis that was nearly complete. By December 2012, Muskaan was ready to go home. Selvi flew to Surrey with the family to train Muskaan’s school teachers and draft an emergency plan with the local hospital. In addition to fire drills, Muskaan’s classmates practiced VAD drills. When Selvi flew back to Edmonton, the family maintained daily contact with the Stollery’s VAD team.

PhOTO PROvIDED bY ALbERTA hEALTh SERvICES

Dr. Buchholz walkeD into the DarkeneD hospital

HeartWare pump. At 18 kilograms, Muskaan fell under HeartWare’s minimum recommended weight. “The family was nervous about it, but were very strong and optimistic and fully aware of what was going on,” Selvi says. The survival rate for VAD pediatric patients is more than 90 per cent. Muskaan underwent surgery that week. Dr. Ivan Rebeyka, the Stollery’s chief pediatric heart surgeon, planted the HeartWare pump in her left side and stitched part of it into the left ventricle of her heart. A small tube ran through the skin of her upper abdomen, which connected to a controller the size of an iPhone. The whirring motor in Muskaan’s chest sounded like a buzzing bee. The alarms on the device made her anxious and sometimes kept her awake at night, but she knew they were helping to keep her alive. Her family underwent 25 hours of training, learning how to understand the numbers on the monitor and change the battery pack every five or six hours. Meanwhile, a team of specialists worked round-the-clock on Muskaan. She was soon able to walk from the bed into the hallway, and then out to the patio. “Once she started walking, she never, ever sat back down again,” Herman says. The biggest feat was eating food again, since Muskaan had long relied on a feeding tube. Dr. Buchholz promised Muskaan that if she was able to eat by Halloween, he would take her trick-or-treating with his kids. She ate little by little every day, growing stronger and taller. It was bitterly cold that Halloween and Dr. Buchholz had to carry Muskaan, but it didn’t matter to her. She posed for a photo with his S TO L L E RY K I D S. C O M

room as Sukhjit was getting Muskaan ready for bed. It had been a long three months since Muskaan had been re-admitted to the Stollery in May 2013. She had suffered a small infection where the tube ran from her abdomen. Her condition was further complicated by a stroke from a blood clot in her brain. Sukhjit turned on the light as Dr. Buchholz walked in. He asked if Muskaan was okay with getting a new heart right away. She wouldn’t have to worry about plugging her device at night, he told them. “I want it,” Muskaan replied before breaking into tears. Harman had just flown back to B.C. the day before when he got the phone call at 9:30 p.m. Sukhjit was on the other end. “Muskaan has a heart,” she said. Harman couldn’t help himself —he started jumping with excitement. The next day, Muskaan underwent heart transplantation over a gripping 10-hour stretch. “It’s scary,” Harman recalls. Within four days, Muskaan started to walk again. After two weeks, she was discharged from the hospital. But before embarking on their flight back home, the Grewal family learned something remarkable. HeartWare, the company that manufactures the pump, said she was the youngest patient in the world to receive the device. So, instead of a quiet exit, Muskaan and her family said goodbye in early August to a throng of hospital staff and reporters. As the camera lights flashed, Muskaan clung to her parents who smiled with pride, marveling at the little girl with the big heart. In December 2013, Muskaan had a heart biopsy to see how her body was coping with the new heart. It registered a level zero, meaning there’s almost no chance her body will reject her new heart. She likely won’t have to undergo surgery again until she’s at least 25 unless she becomes very ill. For the Grewal family, life is getting back to normal. “I have a normal sister now,” Karina, 13, says. “We hang out, watch TV and play games together. It’s more fun having an energetic little sister than the sick sister I used to have.” “I like watching TV and playing games,” Muskaan, now seven years old, says shyly. Her favourite show is Spongebob Squarepants. His stuffed version kept her company for years when she slept in the hospital bed. The Grewal family does miss one part of their past life: the Stollery staff. Last September, Harman and Sukhjit penned a letter to Buchholz and Sinnadurai. “Dr. Buchholz holds a very special place in Muskaan’s heart,” they wrote. “Through Muskaan’s eyes he is seen as a superhero, who is always to the rescue, has the solution to everything, and can make the impossible become possible.” Today the Grewal family is able to count Muskaan’s life in decades to come, and to make new memories with her. Like Muskaan riding the ghost train in Stanley Park for the first time. Like Muskaan jumping out of bed early her first morning of Grade 2, despite staying up late the night before to catch up on her reading. Like Muskaan finally getting the one present she had wished for every Christmas: a healthy, working heart. W I N T E R 2 0 1 4 | HEROES

19


feature Hero

A Night to

RemembeR BY Michelle Lindstrom

The Stollery Foundation’s Snowflake Gala is always a special evening for guests and volunteers

a

fter weeks of voLunteers pLanning and

just a lot of fun and how often do you get the chance to wear a long building props, the Shaw Conference Centre was trans- ball gown?” formed and the more than 1,400 Snowflake Gala attendees Josh Hui, 14, was the young master of ceremonies and proudly let it be known that there really is no place like the Stollery. sported a tuxedo and bow tie. Josh has been involved with the FounOrganizers decided on a Wizard of Oz theme to mark the 17th dation and its various events – Corus Radiothon and DQ Miracle Treat annual Gala on December 9, 2013, which, like previous years, raised Day – for many years. At just a couple months old, he was diagnosed money for the Stollery Children’s Hospital Foundation through ticket with biliary atresia, a rare liver disease that narrows or blocks the bile sales, raffles and auction items. This year’s Presenting Sponsor was ducts. He had a Kasai operation, attaching his bowel to his liver to MacLachlan & Mitchell Homes, the Diamond Sponsor was Syncrude make a large, functional bile duct, and has been doing very well ever Canada while Allstar Show Industries, Aquila Productions, Burke since. Group, Capital Power, Conroy Ross Partners, and The Luxus Group His everyday life isn’t that different from other teenagers; he takes were all Platinum Sponsors. medicine and Vitamin D daily, drinks a bit more milk for the calA Winter Wonderland theme held strong for more than a decade, cium, plays volleyball over sports with heavy contact and has regular before Snowflake Gala organizers bloodwork to monitor his condidecided in 2010 to change things up tion. There’s a remote possibility A lot goes on at the Snowflake Gala, and create a new theme each year to of the need for a liver transplant wow their philanthropic guests. in his future, but Josh’s outlook is adding to the wonderment guests In 2004, when she was only 17, very positive, with little detectable and volunteers feel. It hooks them Jolene Fielden, the Foundation’s concern of another surgery. from the start. senior special events coordinator, Described by Jolene as “the attended her first Gala in support cutest kid around,” Josh was asked of her boyfriend’s sister who was in the Stollery Children’s Hospital. by the Foundation to be the most recent Gala MC, and he didn’t hesi“When I arrived at the Gala I was amazed, ” she recalls. “Growing up tate to accept the offer. “Once I heard I would be working with Carrie in a small town I had never seen anything like that before. That’s when Doll and Daryl McIntyre (CTV News co-anchors), it was such a huge I decided to volunteer for the event every year.” honour for me,” Josh says, adding that he tried to memorize the pages And she has. After volunteering a few times in the Gala’s craft tent of script sent to him before the event just in case there wasn’t a copy and balloon extravaganza area entertaining the well-dressed young at- around on the big night. There was, though, and Josh says he was tendees, she enrolled in NAIT’s business marketing program with the more excited than scared to say his lines to the crowd over the course hopes of becoming an event co-ordinator, specifically for the Snow- of the evening. flake Gala. A lot goes on at the Snowflake Gala, adding to the wonderment “Once you go, you just want to keep going back,” Jolene says. “It’s Jolene and many other volunteers felt that hooked them from the start.

20

HEROES | W I N T E R 2 0 1 4

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


PHOTOS PROVIDED bY THE STOLLERY CHILDREN’S HOSPITaL FOuNDaTION

WIZ KID: Josh Hui, 14, was the young master of ceremonies for the 2013 Snowflake Gala and was joined on stage by CTV News anchors Daryl McIntyre and Carrie Doll.

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

W I N T E R 2 0 1 4 | HEROES

21


PHOTOS PROVIDED BY THE STOLLERY CHILDREN’S HOSPITAL FOUNDATION

OVER THE RAINBOW: Susan Tarling (right) and her friend Karen Maruszeczka never miss a chance to volunteer at the Snowflake Gala. This year’s event had a Wizard of Oz theme and featured music from DJ Kwake.

The 2013 Gala opened its doors at 6 p.m. and guests of all ages in their and kids come together. It’s different than other events because the finest took part in a silent auction, enjoyed roaming entertainment, a kids are so involved.” BioWare Kidzone, Lego table, craft tent, balloon artist and a new social Funds raised will support the education and training of highly media component added to the teen lounge. skilled professionals at the Stollery Children’s Hospital to further “We’re really trying to focus on children’s medical research and moving forward with youth philcare for patients much like Josh. “It’s a nice, fun night to celebrate in a anthropy,” Jolene says. “We get “Everyone was just so positive philanthropic way,” Jolene says. “It’s involved early and make sure they towards me and I received some understand why we fundraise and great feedback,” Hui says. “I am the only black-tie event in Edmonton donate our money and time.” just so happy that I was a part of it where families, adults and kids come But the evening continued with it’s definitely something that together. It’s different than other events and even more to do. Dinner followed I can learn from and be better for because the kids are so involved.” the auctions and car raffle (all items next year – if I get invited.” were donated by local companies), Until then, Josh, a Grade 9 then the main performance took stage – Hanson Jeans, a family band – student, will continue his support of the Foundation and share and finally the night wrapped up with DJ Kwake. his appreciation and story with others considering volunteering “It’s a nice, fun night to celebrate in a philanthropic way,” Jolene for one of the Stollery Foundation’s many fundraisers like says. “It’s the only black-tie event in Edmonton where families, adults Snowflake Gala. 22

HEROES | W I N T E R 2 0 1 4

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


feature HERO

Built With

Bear hands BY Cory Haller

PHOTO: AMY SENECAL

One family company uses its expertise to support the Foundation year after year

Home Sweet Home: Martino Di Luigi proudly showcases Montorio Homes’ eighth Built with Bear Hands home. All net profit from its sale goes to the Foundation.

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

W I N T E R 2 0 1 4 | HEROES

23


PHOTO: AMY SENECAL

department – had a say in how the BWBH home would progress. The first ever home took approximately five months from start to finish but in today’s market, however, the projects – most of which are bigger and bolder – take significantly longer, so the process has evolved from completely in-house to one that includes outside talent. It’s a change that Martino says keeps the BWBH project producing roughly one home every two years, and keeps raising the bar for his builders. “We’ve switched procedures a bit to pull a consultant in to design the home, and to expedite the process a bit. In the past we’ve tried a couple simpler homes or modest homes, but everyone’s expectation is that we build at least an estate home.” With estate homes in mind, the company looks for properties in the $600,000-plus areas in Edmonton and surrounding region, knowing full well that each BWBH home demands only the best. He pulls in a high-end designer, and solicits the sub-trades, contractors and developers to reduce their rates for the noble cause, something he says usually happens as soon as he mentions the Stollery. here’s a newly built estate home on edmonton’s Everyone is happy to pitch in. The developer for the 3,116-squarenorth side. Set in a development called Trumpeter by foot Trumpeter home, United Properties, for instance, sold the land at a Big Lake, the home is sure to attract eager house hunters. reduced rate, and contractors enthusiastically reduced their rates in the It has a double attached garage, with space for three name of charity. It’s the type of support that Martino says makes him vehicles. It features a large wrap-around front porch perfect for proud to be a part of the tradition his father set in motion. enjoying the summer sun. The interior boasts a contemporary It’s a tradition that Mike House, the CEO of the Stollery Children’s feel with an open-concept floor plan accented with clean lines and Hospital Foundation, says has funded a radically progressing form of colours. The kitchen sits atop a floor of white hardwood, which family-centred care, and allows the Foundation leeway when it comes flows into massive floor-to-ceiling cabinetry offset with a large to funding new and exciting forms of research, as well as providing for kitchen island. A double-sided the specialized medical equipment linear fireplace opens to both the needed for the pediatric hospital’s “We’re a family business,” says great room and the foyer. Four large patient catchment. Martino Di Luigi. “Given what the The funds donated from the bedrooms (one complete with Stollery does for families in our BWBH initiative aren’t set aside an en-suite candle fireplace) fill community, we wanted to help.” for any one project in particular, out the home along with three as it would be impossible to plan full baths. But, for all of its show home features, there’s one that really stands out: the full net profit for an exact time the funds are available. After all, who can predict from the sale of this home goes to Edmonton’s Stollery Children’s when someone will find their dream home? “We keep options open so if there is a new and exciting breakHospital Foundation as part of Montorio Homes Built With Bear through, we can invest in that,” Mike says. “But overall we try to Hands (BWBH) initiative. This home is the eighth, and most recent, house that Montorio give where it’s needed the most. We invest money in equipment Homes has built to raise funds for the Foundation since company and programs and services to ensure that throughout the journey a founder Vince Di Luigi originated the BWBH project in 1999. Vince child takes – whether it’s the diagnosis, or the operating room, or resays that the company, while still in its infancy, had gained so much covering in the ICU, or even coming back to the hospital for regular from the community that he wanted to give something back. “By the checkups –they have the best services possible.” But, the Trumpeter home, which is estimated to raise around time 1998 rolled around, we’d been in business for about 10 years,” says Martino Di Luigi, Vince’s son and current general manager and $40,000 for the Foundation this year, does more than just raise vice president of Montorio Homes. “We recognized the Stollery was funds, according to Mike. “It’s funny because, in some ways, we kind of in its infancy as well. It had started around the same time as almost don’t want the homes to sell immediately because of the our company. We are a family business and we strongly believe in visibility the Stollery gets from the communities they’re located in,” family so, given what the Stollery does for families in our commun- he explains. “The more people who walk through the homes, the more realize that the Stollery is there for families from Manitoba, to ity, we wanted to help in any way we could.” Opting out of the well-known approaches to fundraising, such as British Columbia and the north beyond just Edmonton. We’re here a home lottery, for example, Montorio Homes instead did what the for families regardless of where they come from and having support company does best – build and sell quality homes. “We’re builders,” from Montorio Homes outside of Edmonton’s boundaries really helps demonstrate that.” Past BWBH homes have been constructed says Martino, “We wanted to support the Stollery in our own way.” Now with eight houses under its belt, and with over $230,000 in communities such as Windermere, Sherwood Park, Leduc and raised for the Foundation, Martino says the biggest challenge Mon- Beaumont, but wherever they are, Mike says they truly are dream torio Homes faces is to exceed the expectations they’ve set with each homes in every sense of the word. “When you have a group of construction colleagues that come new home – a task he says is easier said than done. When the project began, the homebuilders did everything together to make a home,” he says, “and to build it with love – in-house. From the design stage to the build itself, everyone in with kids behind the purpose – there is something really special the office – from the accounting department to the construction about that.”

t

24

HEROES | W I N T E R 2 0 1 4

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


PHoTos: AMy sENECAL

DESIGNED WITH CARE: The most recent Built with Bear Hands home is a contemporary 3,116 square-foot four-bedroom house located in Edmonton’s north end.

HAIR MASSACURE

SUPPORT KIDS WITH LIFE-THREATENING ILLNESSES

LOSE

FEBRUARY14 SHOW KIDS YOU CARE

HAIR

THE

Register! HairMassacure.com


alumni FILES

BY Colleen Biondi

Never Give Up

PHOTO: ASHLEY CHAMPAGNE

It hasn’t been easy, but Bethany Schultz and her family are recovering from her life-altering seizure six years ago

SUPPORT SYSTEM: Today Bethany is in Grade 12. Her mother Karen (pictured) and father Lorin remain focused on her recovery.

WHEN 17-YEAR-OLD BETHANY SCHULTZ OF Edmonton went to bed one night, almost six years ago, she was a typical preteen with a headache. But the next morning, when her father, Lorin, checked in on her, she was having a massive seizure. Bethany’s life turned on a dime and that is when the Stollery Children’s Hospital became – quite literally – her lifesaver. “It’s just like you see in the movies,” explains Karen, Bethany’s mom. “There “Thank you for helping me is no waiting in a lifesituation.” get better and better! and-death Stollery staff attended Never give up on me.” quickly, ordering CTs, - Bethany Schultz MRIs and angiograms. The diagnosis was a burst brain aneurysm and they treated the bleeding section of the brain immediately. When surgery was complete, they removed the left side of her skull to give Bethany’s brain room to swell, but the aneurysm burst again and to have any hope of saving Bethany’s life the surgeon made a split-second decision to coil the main artery, cutting off oxygen to that segment of the brain. It was often touch-and-go during this very risky surgery. “You had a happy, healthy child and now you are losing her,” 26

HEROES | W I N T E R 2 0 1 4

recalls Karen. “But Dr. Keith Aronyk [the pediatric neurosurgeon] wouldn’t give up on her.” Staff at the Stollery always went the extra mile during Bethany’s recovery. They painted her toenails and brushed her teeth when she was in a coma. Although she was on a breathing machine and needed a cooling blanket to lower her body temperature, a nurse and respiratory therapist took her on visits to the atrium to get some sunshine and even outside to get fresh air. “She could hear the sounds of life around her,” Karen says. “It helped a lot.” After three months in the hospital, Bethany spent a year in rehabilitation at the Glenrose. Today, Bethany remains in “active recovery mode,” says Karen. With the help of a wheelchair and an aid, she goes to Grade 12 with her friends. She takes options in the morning like drama, applied graphic arts, guitar and CALM. She does all the work; it just takes a little longer or needs to be adapted. In the afternoon, she attends a variety of therapies. Hyperbaric oxygen therapy, where pure oxygen is forced into her brain, which helps with healing. Occupational therapy and physiotherapy help with a range of abilities like core strengthening and balance, daily living activities, regaining her ability to walk, and re-learning lost 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


skills like how to print with her left hand. She also has two different speech nine-year-old twins Annika and Aidan, all of whom, along with Bethany, therapists assist with communication and tongue movement. Bethany also split their time between Karen and Lorin. There are ongoing financial ishas had sessions on the Lokomat machine, which is a specialized treadmill sues from the cost of items such as a wheelchair accessible vehicle and with robotic legs to help her re-learn to walk. Bethany was essentially both homes needed to be modified for Bethany’s special needs. The para quadriplegic after release from the ents sought counselling when Logan hospital; now after years of daily admitted that he wished he was the “The Stollery cares about the therapy she can walk short distances one who got sick, not his sister. children long after they’ve been with assistance. “Her feet are get“You take it one day at a time,” discharged. Dr. Aronyk and his team ting better at knowing what to do,” says Karen. “And you come out of it her mom says. stronger than ever.” The family has never gave up hope, so we never Bethany can talk but is not always received tons of support from specialdid either. They saved her life.” easily understood by others. She can ists and the community who raised - Bethanny’s mother Karen. eat anything but uses a g-tube for funds for Bethany’s new accessible medicines or specialized liquids. She bedroom at her mom’s place. “The works on a touch-screen computer and uses large printing because her logistics are enormous; either a friend or caregiver or therapist is around at vision is seriously impaired. all times. Bethany’s house does not function with only one adult in it.” Despite these extraordinary challenges, she is happy and motivated. AlBethany is medically fragile and, although progressing every day, is still though she cannot be left alone, she is not depressed. “Bethany’s goal is to at serious risk. The family remains involved with the Stollery. There are be the best she can be,” says Karen. When Karen asked her daughter what regular appointments with doctors and meetings with pain specialists. she’d like to add for this article, Bethany relayed, “Thank you for helping me Bethany attended Camp Everest – a Stollery Foundation supported camp get better and better! Never give up on me.” for children with brain or spinal cord injuries – on two different occasions. The Schultz family has focused on Bethany’s care and recovery from day “The Stollery cares about the children long after they’ve been discharged,” one. It has not been easy. Karen and Lorin recently separated. Karen has her Karen says. “Dr. Aronyk and his team never gave up hope, so we never did own health issues and is slowly returning to work as a kindergarten teacher either. They saved her life. You take a hospital like that for granted and you and Lorin was laid off by his employer last spring after nearly 10 years of hope to never have to use it, but when you do, there is no way you can ever service. The family has three other children: a son, Logan, who is 11, and pay these people back.”

PHOTO: ASHLEY CHAMPAgNE

THE BRIGHT SIDE: Despite her challenges, Bethany is a happy and motivated high school student.

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

W I N T E R 2 0 1 4 | HEROES

27


ILLUSTRATION: LISA REBNORD

giving Guide

Control

Your Flow BY Mike Skrypnek

If you pay taxes, you’re an involuntary philanthropist. There are ways to redirect your involuntary social capital to causes important to you

28

HEROES | W I N T E R 2 0 1 4

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


my family will get everything I leave to them in my will. The government can have what’s left.” I work in legacy and estate planning and I hear this all the time. It begs a few questions: Is our participation in the taxation of our wealth mandatory (involuntary)? Does someone else hold all the control? Have we any choice in the matter, or are we destined to share all we’ve made and all we’ve accumulated with the government in the end? Many people believe they have more control than they do. Unfortunately, they have things in the wrong order. The very first “person” at the trough in your estate is Revenue Canada (CRA). Your family and friends are the ones who share whatever’s leftover. Does that sound fair? Well, it depends on your vantage point, I suppose. It also depends on your understanding of how the government has designed its tax system to encourage you to re-direct your wealth. They’ve made rules that deter us from paying them as much, if anything at all. Webster’s defines a philanthropist as, “a benevolent supporter of human beings and human welfare.” But who is this person? Someone who potentially gives approximately 25 per cent of their capital gains and/or up to roughly one-half of their income to support the general welfare of our country? Well, that’s all of us. In other words, we could all be considered “involuntary philanthropists.” To get a better picture of how your taxes are disbursed, check out the diagram in the next column. It’ll tell you how a single dollar raised by government through taxation ($631 billion in 2010) is spent. You will likely decide it’s not the way, given a choice, you’d choose to donate your money. But it’s possible to take more control and redirect some of your share of the taxes voluntarily. Understand that I truly believe we live in one of the most enviable countries on the planet and it is largely due to our tax system. As taxpayers, that is our bargain with our government. We pay our taxes and the government takes care of the collectively important big ticket issues. However, it goes without saying that many of us would like the option of redirecting a percentage of our involuntary social capital to those causes that are important to us. Our government actually credits us to gain control over our philanthropy. In fact, Ottawa provides incentives to encourage giving. As an example, if our government wishes to increase real estate ownership, it allows a number of tax breaks for the purchase, ownership and sale of this asset class. Since 1996 it has introduced into our Income Tax Act over 20 different incentives to facilitate giving. One of the most notable incentives in recent years is the removal of the capital gains tax when securities are donated to charity. So, people with “trapped” capital in appreciated securities are able to donate their shares without paying any tax and earn the charitable tax credit for doing so. These types of incentives have created what many would argue is the most generous tax environment to promote charitable activity in the world today. Revenue Canada is not about to direct you to best possible methods in our Income Tax Act to relinquish their control and reduce their share. But you can seek out professionals who do know the rules and understand planned giving in order to allow you greater control of where you direct your assets. In fact, with the proper planning and use of all the tools available to Canadians, it is even possible to plan for a zero tax estate using charitable giving. Sometimes the goal of strategic philanthropic planning is not only to reflect the charitable intent of the donor, but to also re-direct our social capital by either replacing or removing tax from the succession of your estate. One such tool that is available is insurance. The tax free nature of the death benefit payout combined with the

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

where tax dollars Go: 1

13

2

3 4 5

12

6

7 11 SOURCE: STATISTICS CANADA, (FISCAL YEAR ENDINg) MARCh 31, 2009 TO MARCh 31 2010

C

harity starts at home and when i die,

8 10 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13.

9

Canada Revenue Agency (3 cents) Public Safety (3 cents) Canada Social Transfer (4 cents) Children’s benefits (4 cents) Crown Corporations (4 cents) Defence (8 cents) Employment Insurance benefits (8 cents) Other Major Transfers to Other Levels of government (8 cents) Canada health Transfer (9 cents) Other Operations (11 cents) Public Debt Charges (11 cents) Support to Elderly (13 cents) Other grants and Contributions (14 cents)

tax-sheltered investment growth and the leverage it can provide for a gift, make it a powerful planning instrument. If charity is named as the beneficiary of an insurance policy, the subsequent tax credit can make a huge impact in the final tax return of a person/family. If this type of voluntary philanthropic planning, with its focus on personal relationships and values, resonates with you, I would encourage you to seek out a financial advisor with a specialization in charitable planning. They will investigate the numerous strategies that could help you focus on what’s most important. For answers and strategies on how to re-direct your wealth to causes and institutions you care about while planning for a zero-tax estate, email me.

mike skrypnek, author of Philanthropy; An Inspired Process, is an expert in guiding families in the journey to make a bigger impact in their lifetimes and beyond. This is the second of a four-part series. Contact Mike at mike.skrypnek@richardsonGmP.com. W I N T E R 2 0 1 4 | HEROES

29


NEED PHOTO CAPTION: Met illuptat, dolum quat la commodio od min dolum henim nonullandre magna feumsandre conullute veliqui ssequis ad dolum velit.

30

HEROES | W I N T E R 2 0 1 4

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 Deepti Babu

one to watch

Heart

Mender The Stollery’s well-established VAD program attracts a top cardiologist for the littlest patients

PhOTO: KELLY REDINgER

o

n a frigiD EDmonton Day with a high of

to Toronto to receive transplants. “It amazed me how sick these children -25˚C, Dr. Jennifer Conway confirms that she did not take her were when we sent them away, and how different they were when they new job in the city because of the weather. When Dr. Conway came back,” Dr. Conway recalls. This period of caring for young children moved from her hometown of Toronto to begin her work at who faced long periods of cardiac recovery profoundly affected her cathe Stollery Children’s Hospital last September she knew the weather reer. “There was such a wide range of care needed to get a very ill child to wouldn’t always be the greatest, fortunately she also knew about the be well. Watching them get through their milestones during that transiStollery’s great reputation. “All decisions are multifactorial,” she says. “I tion was inspirational and remarkable.” considered the weather, but I think there are lots of great opportunities Dr. Conway is an active and award-winning researcher, earning disfor me here at the Stollery.” tinctions like a 2011 Young Investigator Award from the International Grabbing an opportunity is something Dr. Conway does well. During Pediatric Transplant Association. “There are lots of unanswered quesher work and training in Toronto and Halifax, she collaborated with tions,” she explains. “If we could answer them, maybe we could improve many Stollery pediatric cardiologists and other physicians, so when the patient outcomes long-term.” chance came to work with them directly, she took it. She knows that even answering a few of the smaller questions about Dr. Conway’s particular expertise lies in pediatric heart transplant, pediatric cardiology could potentially make a big difference to patient heart function and ventricular ascare. “We might understand a little sist devices (VADs) – mechanical more about the problem so we can “Even if we’re able to answer small pumps used to support heart funccounsel families appropriately.” questions, we might understand a tion and blood flow in patients with And being able to properly educate little more about the problem,” weakened hearts (see Muskaan’s families about their child’s heart amazing story on page 17), “I knew condition or transplant is clearly Dr. Jennifer Conway says. the Stollery had an excellent, wellimportant to her; she is part of an established VAD program,” she explains. “I was eager to work with and ongoing collaborative North American initiative to develop parentlearn from my colleagues, the same people I’d already met through the focused materials about pediatric cardiac transplants. years in the heart function/VAD/transplant world.” She’s also fuelled by a desire to work with others. An active member She also knew there were plans to create a new heart function program of many national and international pediatric cardiology committees at the Stollery, something she hopes to help contribute to. “I’d like to and networks, Dr. Conway has also helped develop clinical protocols focus my research more on heart function, cardiomyopathy [a disease and guidelines that impact pediatric cardiac care delivery. Along with of the heart muscle] and VADs in the future,” she says. “The prospect of some of her Stollery colleagues, she contributed to the Canadian Jouroffering input into a new heart function program is very exciting.” nal of Cardiology, publishing the new Canadian practice guidelines Always intrigued by the sciences, Dr. Conway sought a career in medi- for pediatric heart failure. These aim to help primary care physicians cine to feed her curiosity and desire to work with others. “Interacting understand the signs and symptoms, diagnosis and medical managewith people – patients or fellow colleagues – to make a difference in ment of heart failure in children. She has also started mentoring and someone’s life, I think that’s what brought me into this field.” She knew developing projects with trainees who have an interest in heart function she had an interest in intensive care medicine, but her choice of pediatric and transplant. cardiology came from an opportunity at IWK Health Centre in Halifax. With all this on her plate, what’s on the horizon? For one, Dr. Conway “I kind of fell into it. There was a chance to do pediatric cardiology work and her colleagues aim to streamline care for young children needing while I was in Halifax, so I took it.” the Stollery’s upcoming heart function program. They hope that some The effects of heart transplants on the children Dr. Conway cared for of these children will one day be able to wait for their heart transplants during her time in Halifax had a meaningful impact on her, which led at home, instead of in the hospital. Because, after all, Dr. Conway now her to specialize in cardiac transplant and cardiac failure. With no cardiac knows as well as any Edmontonian, when possible, the cold winter days transplant program in Halifax, children with heart failure had to travel are better spent at home.

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

W I N T E R 2 0 1 4 | HEROES

31


Why I donate

Clockwork

Donors BY Colleen Biondi

There is a myth that donors are rich and that gifts to the Foundation have to be large to make an impact. Not so!

I

t started out as an ordInary day. But for BernICe

ordered a MRI to rule out fluid on the brain. Noah was in the hospital Harrison, who was listening to the Radiothon fundraiser for the for 10 days. In 1998, Howard’s 16-month-old great nephew Neal was in an Stollery Children’s Hospital Foundation from her cattle farm near Barrhead, it turned out to be quite an extraordinary one. ATV accident near Whitecourt and fractured his skull. He was transLike so many others, Bernice was blown away by the countless in- ported to the Stollery via STARS Air Ambulance. He had x-rays and spiring stories she heard from doctors, children and their families re- CT scans done during the four-day assessment and treatment period. counting their experiences at the Stollery. The Radiothon puts a voice Nurses even brought in a cot into his room so his mom could sleep to the Hospital and it’s a voice that speaks strongly. When Bernice sat over, keep him company and console him. And, granddaughter Leah, born in 2011, suffered from the respirathere, listening intently, her mind was quickly made up; this was an tory syncytial virus (RSV) as an inorganization she needed to supfant. She had difficulty breathing port. “I heard the stories about the Rural Albertans know first-hand and was admitted to the Stollery. children,” she says. “And they just how important the Stollery is across Staff put her on oxygen and atgot to me. I decided we needed to the province. tached an IV as she wasn’t eating. donate to this organization.” She was in hospital for two weeks. That was more than 10 years ago and the rest – as they say – is history. She donated $25 that day and “You’d never know it today,” says Bernice, now 61, and a receptionist now she and her husband, Howard, donate $10 per month for each at Pembina Hills Regional Division #7 in Barrhead. “She bounced of their six grandchildren – Courteney, Tanner, Riley, Jacey, Jamie and back and is a smiley little girl now.” The care provided to the three children was nothing short of exemLeah. Although there are no additional births on the horizon, if the brood grows, Bernice says there’ll be additional $10 monthly dona- plary, says Bernice. Staff was caring and supportive to the family. tions. “It comes right out of our VISA account, we don’t see it. We are They went out of their way to provide specialized care, follow-up and comfort. just pleased to be donating to the Hospital.” Bernice and Howard have had up-close-and-personal experiences Living in rural Alberta, Bernice knows first-hand how important with the Hospital, its services and its multi-disciplinary team. Her the Stollery is across the province. “If it hadn’t been for the Hospital great nephew Noah arrived at the facility from St. Albert Hospital being so available to us, I am not sure Leah would be here today.” in 2008 shortly after his birth. He was having trouble breathing Leah returned to the Stollery last year when she broke her arm. and a respiratory therapist gave him medication to lubricate the Tended to initially at the Barrhead Healthcare Centre, she went lungs. His head was larger than normal at birth, as well, so physicians to the Stollery for a follow-up. There, Leah was evaluated and got a

32

HEROES | W I N T E R 2 0 1 4

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


new cast. “The team always goes above and beyond,” Bernice says. terminology, Jennifer recalls. They weren’t afraid to laugh at funny “They are exceptional.” things when appropriate, adding a sense of humour to a stressful Bernice and Howard, who are retired farmers, remain busy in their environment and easing the extreme pressure on patients and their golden years. They love to travel and camp with their fifth wheel trailer loved ones. “The donations to the Stollery are imperative to that work and have been active volunteers for and to the care being provided,” the community of Mystery Lake. she says. “We are forever grateful “Everybody needs to help support They are dedicated parents of three to have access to such a facility.” that hospital in some way, whatever grown children – Trent, Trevor and Bernice recommends other Jennifer – and, as grandparents, families consider donating in a they can adequately afford. It is a provide the cheering squad when similar fashion, whether they’ve great place which is near and dear to the young ones are involved in directly used the Stollery or not. communities around Alberta.” extracurricular activities like ball, “Definitely give to the Stollery,” hockey and dance (all the grandshe says. “Everybody needs to children live within 20 minutes of grandmother and grandfather). help support that hospital in some way, whatever they can “We are a very close family,” Bernice says. adequately afford. It is a great place which is near and dear to Their daughter Jennifer, whose family also contributes to the Foun- communities around Alberta.” dation, is proud of her parents’ philanthropy and hopes to instill this attitude in her own children one day. “I think it’s wonderful that they Fund the Foundation: If you’re interested contribute an amount that has such value and meaning to them,” she in contributing to the Stollery Children’s Hospital says, “and to a cause that has meant so much to us as a family.” Foundation, visit stollerykids.com or contact When Leah was sick, staff at the hospital talked to Jennifer and Katherine Captain at 780-431-4605 to donate. her family “like real people” instead of using complicated medical

STRONG LEGACY: Bernice and Howard Harrison donate $10 per month to the Foundation for each of their six grandchildren.

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

W I N T E R 2 0 1 4 | HEROES

33


corporate HERO

Family

Values BY Tricia Radison

Longtime Stollery supporter Chemco makes a different kind of donation

G

ivinG back TO THE cOmmuniTy is a cEnTRal

no useful vision. The surgery had to be done as soon as possible and ideally value at Chemco Electrical Contractors Ltd. Over its 50-year before two months of age,” says Dr. Solarte. history, the Edmonton-based construction company has given The cataract was removed three days later and Jenna, her husband Ryan, countless dollars to various charities and foundations in West- and their entire family – including Farah – were extremely grateful to Dr. ern Canada, including supporting the Stollery Children’s Hospital Foun- Solarte and the pediatric ophthalmology department. They wanted to give dation with thousands of dollars over the past decade. This year, Chemco back and Farah, who has been with Chemco for almost 14 years, knew did something a bit different, extending its generosity to a specific depart- exactly where to turn. ment at the Hospital that played an “I don’t know if you can actualimportant role in the life of one of ly describe the generosity of this “Children are the future and their its employees. company,” says Farah. “Everything The story begins when new mom they do involves giving back in health and happiness are important, Jenna Prins learned that her fivesome way.” so we have been supporting the week-old son, Cohen, had a cataEach year, Chemco holds two golf Stollery for many years,” ract in his left eye. Cohen’s doctor tournaments, one for employees and says Todd Halina, chief in their hometown of Red Deer told one for clients. The company matchoperations officer at Chemco. her that the cataract would need to es the money raised and chooses a be removed as soon as possible and cause to support. It does the same referred him to Calgary for the surgery. When Cohen couldn’t be seen right thing with the Christmas party, matching funds raised through the sale of away, Jenna called her mom, Farah Blackmore, who works at Chemco. raffle tickets. Most of the time, the charities or foundations selected sup“Jenna was upset so I got on the Internet and Googled the Stollery. port children and their families in some way, and employees are invited to There was a phone number for the ophthalmology department and I contribute their ideas about where to donate. told her to phone them. She called and they said they could see Cohen “Children are the future and their health and happiness are important, the next day,” says Farah. so we have been supporting the Stollery and the Make-A-Wish Foundation At the Stollery, Jenna met with Dr. Carlos Solarte, who examined Cohen. for many years,” says Todd Halina, chief operations officer at Chemco. “Our He quickly knew that Cohen needed surgery as soon as possible. employees bring great ideas to the table, and while we can’t do everything, “He had one eye that was completely normal and the other eye had a we try to accommodate them and share some of the funding amongst the congenital cataract. If we waited until the baby was more than two or three organizations that they support.” months of age, his brain would select only one eye; the other would have At Farah’s request, Chemco’s 2013 golf tournaments raised money for 34

HEROES | W I N T E R 2 0 1 4

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


CLEAR VISION: When five-week-old Cohen Prins needed a cataract removed, the Stollery’s ophthalmology team was there. When Cohen’s grandmother Farah Blackmore (pictured here with Cohen) told her co-workers at Chemco, the company decided to give back.

the ophthalmology department that helped her grandson. In total, the that arises out of Chemco’s values, which are shared by everyone from prescompany donated $31,398.66 to the department, which is undergoing an ident Brian Halina down. extensive renovation. “We look for people with similar values to ours, giving back to families “As a foundation committed to ensuring excellence exists in all areas in our communities,” says Todd. “Our growth is a result of our strength, of the Hospital, we invest in the best people, programs, equipment and which is our people.” research – all of which truly make the Stollery the special pediatric centre Cohen’s family is very appreciative of both the Stollery and Chemco. that it is,” says Katherine Captain, director of development for the Founda- “To work for them is the only way you can really understand how amaztion. “By focusing on the Hospital’s ing and kind-hearted they are,” says priorities, which includes creating Farah. “It’s not very often that you “To work for them is the only way you love the work that you do and work more clinical space and resources for can really understand how amazing ophthalmology, we are able to profor a company that appreciates you.” vide the highest standard of care for Her daughter Jenna agrees and is and kind-hearted they are,” says the hundreds-of-thousands of kids Farah. “It’s not very often that you love incredible thankful for the Stollery and families who rely on the Stollery and companies like Chemco that are the work that you do and work for a each and every year.” dedicated to supporting children in company that appreciates you.” As part of the Critical for Care the community. campaign, the Foundation has a “We really wanted to donate to goal of raising $400,000 specifically for new equipment for assessing them because of all the help and support they gave us, and for everything eyes and vision. they did for my son and the other patients,” Jenna says. “I’m so thankful for “The donation came at the perfect time, when we are committing to Chemco and everything they did to support Dr. Solarte and the ophthalbuying new and expensive equipment. We are lucky and grateful that mology department on Cohen’s behalf. They are a really great company Chemco decided to support us because of their experience with Cohen,” that loves to help children and their families.” says Dr. Solarte. Chemco, which has branches in Fort McMurray and Saskatoon, has FUND THE FOUNDAITON: If you’re interested grown extensively in the past few years and now has about 2,200 employin contributing to the Stollery Children’s ees. But it has a significant number of employees who have been with the Hospital Foundation, visit stollerykids.com company for decades, largely because employees feel valued through acto find out how to donate. tions like supporting the causes they care about. The commitment to do S TO L L E RY K I D S. C O M

W I N T E R 2 0 1 4 | HEROES

35


Children’s Miracle Network partners raise criƟcal funds for local children’s hospitals across Canada. These funds support criƟcal research, purchase life-saving equipment, and provide excellence in care for children in our community. On behalf of the children impacted by your generous contribuƟon, THANK YOU!

ChildrensMiracleNetwork.ca


BY caitlin crawshaw

hOspital portrait

Baby Breaths Dr. Lannae Strueby, under the supervision of Dr. Bernard Thébaud, uses stem cells to repair lung damage, caused by life-saving medical treatments, in premature babies

rates of extremely premature babies (those born before 28 weeks gestation) have drastically improved. Unfortunately, they still suffer from a wide range of complications. One of the most common complications these babies face is known as bronchopulmonary dysplasia (BPD) or “chronic lung disease of infancy,” explains Dr. Lannae Strueby, who is training to become a neonatologist at the University of Alberta. Because the lungs of premature babies haven’t developed for life outside of the womb, they need medical help – such as ventilation and oxygen – to breathe. “We can provide that help, but at the same time, these medical interventions can damage or injure the lungs,” says Dr. Strueby. The condition puts babies at increased risk of future respiratory complication such as recurrent respiratory tract infections, wheezing, and asthma. “There’s some evidence showing that these babies are more likely to have adverse effects into adulthood,” she adds. Strueby hopes stem cell therapies could one day help these babies fare better as they grow. After receiving her medical degree at the University of Saskatchewan, Strueby came to Edmonton in 2011 to receive specialized training in neonatal medicine. She is the current recipient of the Deloitte Fellowship in Pediatric Clinical Research through the Stollery Children’s Hospital Foundation and is completing a master’s of science degree under neonatal researcher Dr. Bernard Thébaud. And it’s her master’s research that looks at whether a specific kind of stem cell (mesenchymal stem cells) might be used to prevent lung injury in premature babies. Stem cells – which can be found in the bone marrow, as well as the blood and tissue of the umbilical cord – can be introduced into damaged tissue in order to repair it. Because stem cells haven’t yet differentiated into any specific type of cell, they will mirror the cells around them, recreating tissue lost to disease or injury. Traditionally, stem cell therapies have involved giving patients the entire stem cell. However, there are theoretical risks to doing this, including tumour growth and immune rejection, says Strueby. But her research involves giving a cell-free solution that contains components secreted by the stem cells, which might be able to provide some of the benefits without the negative side effects. “If you can actually take the cells out, and give just the secreted products, you hopefully have a lower risk of the adverse effects,” she explains. While Strueby hasn’t yet completed her research, preliminary data leaves her feeling optimistic that this solution S TO L L E RY K I D S. C O M

PHOTO: BUFFY GOODMAN

Over the last twO decades, the survival

could one day be given to babies through their breathing tubes to lessen the damage to their lungs, and that’s good news for the Stollery Children’s Hospital. After three years in Edmonton, Strueby is nearing the end of her master’s program and the third year of her fellowship, and is looking forward to working as a full-fledged neonatologist. “It has a nice mix of everything for me. You get to look at the complete picture of each patient and treat the baby as a whole, but still get the family dynamic,” she says. But after her master’s program, Strueby says she’s excited by the prospect of conducting similar research down the road. “The knowledge and the training you get in doing this is invaluable,” she says. “I have a whole new respect, new insight, into the research process.” W I N T E R 2 0 1 4 | HEROES

37


the LaSt word

BY melissa mills

Close to the Heart

Melissa Mills was the first to have the Berlin heart removed without immediate heart transplantation. Today she is in college and hopes to one day work at the Stollery You maY think i am an average 22-Yearold woman, but I do have scars that remind me of unforgettable memories from a time in my life. In 2006 I got sick and was diagnosed with cardiomyopathy. It escalated so quickly that my family and I didn’t understand what was happening with me. It got to the point where making it through the night was uncertain and that’s when the doctors decided to implant me with the Berlin Heart. Throughout my stay at the Stollery, I grew comfortable with my Berlin Heart (see ‘A Holiday for the Heart’ article on page 11), and it eventually became a soothing device that I laid in my lap. After sometime my own heart was able to regain its strength and I was then able to come off the Berlin Heart without needing a transplant. A year and half later my heart began to fail and once again I was placed on

38

HEROES | W I N T E R 2 0 1 4

the heart transplant list. Four weeks later the call came in. I am now five years post-heart transplant and am the happiest I have ever been. I am living in Edmonton, working in retail, and going to college to finish my medical office administrator diploma. I now dream of one day working in the Stollery Children’s Hospital so I can help those who are going through what I once went through. I wish for my future to be bright and filled with wonderful memories. I would like to thank all the nurses, doctors and medical staff that worked together to make me healthy. Without their hard work and dedication I would not be alive today, telling my story.

The following is a poem Melissa wrote when she was 15 and with her Berlin Heart.

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


  The Foundation is humbled and privileged to be supported by Alberta’s most passionate child health supporters, advocates and philanthropists. The success we achieve as a Foundation is a direct result of your generous contributions whether through donations, major gifts, sponsorship or volunteerism.

Thank you for helping us raise more than $590,000 at this year’s Snowflake Gala in support of highly skilled professionals at the Stollery.

PRESENTING SPONSOR

PLATINUM SPONSOR ALLSTAR SHOWINDUSTRIES

DIAMOND SPONSORS

CRYSTAL SPONSORS


Celebrating 15 years! Presented by

Thank you for helping us fund excellence at the Stollery! With your amazing support, we raised

$1.42 million!

Special thanks to our 2014 Corus Radiothon sponsors and partners!

HEROES – Winter 2013