Winter 2012 - Alberta Children's Hospital Foundation

WINTER 2012
World First Clinical Trial!
New Hope for Babies
As stylish as she is, the Barbie backpack Hayden Kretschmer carries
with her is more than just a fashion statement. It holds a pump
and the special liquid nutrients she needs to survive with her severely
damaged intestinal system.
Four years ago, Hayden was born weighing just five pounds and missing
90% of her bowel. Specialists with the Children’s Hospital Intestinal
Rehabilitation Program (CHIRP) saved her life and helped her grow
strong enough to live outside the hospital.
Thanks to donations from the community, the CHIRP
team is now about to begin a world first clinical trial
to study what they believe could be a tremendous
breakthrough in curing kids like Hayden.
continued on page 2...

Since she was born, Hayden
Kretchmer has been under the
care of Dr. David Sigalet. His
research may hold the answer to a
life-long cure for kids like Hayden!
“We’ve been working on developing this new drug for nearly
a decade and are pleased to finally have the chance to provide
children with its benefits,” says Dr. David Sigalet, pediatric surgeon
and lead investigator in the clinical trial. “We believe this therapy
will boost a child’s ability to absorb nutrients naturally. Once we
confirm this, it will be used around the globe.”
About every nine days, a baby is rushed to
the Alberta Children’s Hospital suffering from
severe intestinal problems, often leading to
intestinal failure. Lacking the ability to absorb the
proteins, vitamins, and essential nourishment
needed to survive, without treatment these
fragile babies would slowly starve to death.
Thankfully, community support has helped our
hospital become an international leader in the
field, with survival rates rising from 72% to
100% over the last five years.
“Caring for these babies and children like Hayden is a delicate
balancing act,” says Dr. Dana Boctor, pediatric gastroenterologist
and another member of the CHIRP team.
“Since their intestines cannot absorb enough for them to survive,
we have to provide them with nutrients delivered directly into their
blood stream. That can damage the liver, and over time lead to liver
failure. So very slowly and carefully, we introduce food through
“We hope people who have
invested in our work feel
a genuine sense of pride in
knowing what a difference
they are making for Hayden
and kids just like her.”
13-year-old Gib Hocken
a tube in their stomach, one millilitre at a likes time, to and joke then with his when
they are ready for larger amounts they can surgeon, receive Dr. small Gerry amounts Kiefer.
by mouth. But if we give them too much, it can set them back to
square one very quickly.”
Intestinal failure is among the most common causes of death in
normal children in pediatric hospitals in industrialized countries
worldwide. It occurs most frequently in premature babies. They
often suffer infection, loss of blood supply or are born with
malformations which destroy the bowel and rob them of the ability
to absorb the nutrients they need to grow... and live.
“We spent Hayden’s first nine months in hospital,” says mom,
Marina. “The CHIRP team saved her life many times over and
continues to do so today. We’re at the point where Hayden can
be fed both intravenously and in very small amounts by mouth. But
she still spends more than 15 hours a day hooked up to pumps.”
The new therapy developed by Dr. Sigalet and his team uses a
naturally-produced hormone called GLP-2 to stimulate bowel
- Dr. David Sigalet
growth and nutrient absorption. Their
laboratory results indicate that GLP-2 should
be able to help get children off intravenous
feeds earlier, with fewer long-term side effects.
That’s great news for Hayden and her family
since she will be one of the first to receive the
new treatment.
“We are so grateful to the hospital for
everything they have already done for us,” says
Marina. “The team has cared for Hayden so
well and with so much love that despite all her challenges, she is a
spitfire! Now, with this new therapy, we have even more hope for
her future.”
“It brings us so much joy to be able to help these vulnerable babies,”
says Dr. Sigalet. “And I can honestly say that our team’s success is
a direct result of donations from the community. We hope people
who have invested in our work feel a genuine sense of pride in
knowing what a difference they are making for Hayden and kids
just like her.”

Trican Donates $5 Million
to fight Childhood Cancer
Director of Pediatric Oncology, Dr. Doug
Strother (far left) celebrates with Trican
Well Service (l-r) Dale Dusterhoft (CEO),
Donald R. Luft (President & COO), and
Murray Cobbe (Executive Chairman).
Children and families
needing outpatient care
for cancer and blood
disorders are now receiving
care within the newly
named Trican Hematology,
Oncology and BMT Clinic
at the Alberta Children’s
Hospital.
The Trican Clinic was named in honour
of an unprecedented $5 million gift
from Trican Well Service Ltd. in support
of childhood cancer care at the Alberta
Children’s Hospital, as well as research at
the Alberta Children’s Hospital Research
Institute for Child and Maternal Health and
the Southern Alberta Cancer Research
Institute at the University of Calgary.
Trican’s gift was announced in December
and will be directed specifically to two
areas in which our childhood cancer team
is nationally-recognized: Blood and Marrow
Transplantation (BMT) and Novel Therapies.
“Trican is honoured to help advance care
for the brave kids and families fighting
cancer,” says Dale Dusterhoft, Trican CEO.
“This gift is all about improving their health
and well-being, and eventually finding a cure
for the disease.”
“Trican’s gift is an important example of
how our health care system is strengthened
through partnerships,” said Minister
of Health and Wellness, Fred Horne.
“Collaboration between Alberta Health
Services, the University of Calgary, the
Alberta Children’s Hospital Foundation,
and especially generous community leaders
like Trican is fueling innovation and new
approaches to cancer care.”
“Trican’s very generous $5 million gift is the
largest we’ve ever received for Oncology,”
says Alberta Children’s Hospital Foundation
President and CEO Saifa Koonar. “Cancer
is a word that strikes fear in all our hearts
and it seems even more unjust when a
child is affected by the diagnosis. Thanks to
support from community leaders like Trican,
we don’t have to stand idly by. We can find
better treatments and cures for these kids.”
“It’s great for our families and staff that
Trican is willing to step in and make life
better for kids battling cancer,” says Dr. Doug
Strother, Director of Pediatric Oncology at
the Alberta Children’s Hospital. “Trican’s
generosity will allow us to build upon our
expertise in BMT and Novel Therapies,
helping to ensure we will save more
children, faster and with fewer side effects.”

There’s Power in
Every Hour!
Sabina Way has no idea who tops the country music charts; nor
can she name the most popular classic rock songs. But she’s a huge
fan of Country 105FM and Q107FM for other sounds she’s been
listening to which are not at all musical.
Sabina’s beautiful baby, Nyla, was born last May with a cleft palate,
facial paralysis and a severely shortened jaw. Her chin was positioned
so far back that it pushed against the soft tissue in her throat and
blocked her airway. Baby Nyla also has trouble swallowing which
means she is at high risk of having obstructions in her airway which
could cause her breathing to stop.
Thankfully, because of radiothon donations, Nyla has been hooked
up to the most state-of-the-art cardio-respiratory “early warning
system” our hospital has ever had in its inpatient units. Crucial
real-time visual displays and special audio cues help doctors and
nurses measure and monitor Nyla’s oxygen saturation, heart and
breathing rates 24 hours a day.
Sabina Way is grateful for the support from the
community for babies like hers!
Nyla has been in hospital her entire young life. Thankfully,
surgeons at our hospital have been able to lengthen her jaw
so she can breathe on her own. However, even though she is
slowly making progress, she is still very vulnerable.
“While some people might find the beeping of hospital machines
a little annoying, we know those beeps and this technology have
saved Nyla’s life five times” says Sabina. “It’s amazing how fast her
doctors and nurses can respond when they know something is
wrong.”
Some of the first advanced cardio-respiratory monitors like the
ones helping Nyla were funded during the 2009 Country 105/
Q107 Caring for Kids Radiothon.
“We featured this technology during a few of our Power Hours,”
recalls Country 105’s Scott Phillips. “We told people how urgently
this equipment was needed and they responded by helping us buy
three. I still remember Dr. Bailey jumping out of her seat when we
reached our goal!”
February 8 - 10, 2012
6 am to 7 pm daily
“We are just so grateful to radiothon listeners and other members
of the community for supporting this crucial system,” says Dr.
Michelle Bailey, Section Chief of Hospital Pediatrics. “The children
who are admitted to hospital today are more acutely ill than they
were even five years ago. Our patients - especially babies and kids
with bronchiolitis, heart and breathing problems – can deteriorate
very suddenly, demanding our intervention within seconds, not
minutes.”

Tune in to
RADIOTHON 2012
on Country 105FM and Q107FM
February 8 - 10
6 am - 7 pm each day
“Not only does it help us to respond more rapidly than ever to
potential respiratory and heart failure in kids, it helps us analyze,
assess and prevent future crises,” adds Dr. Bailey. “Without a doubt,
this technology is playing an important role in helping us save lives
and prevent the deterioration of children’s health. Over 1500
children will benefit from it every year.”
“Nyla means the world to us,” says Sabina. “She’s calm, content and
cute, but she’s also a feisty little fighter. She wants to be here. And
the fact that people who listened to radiothon - who don’t even
know us - are helping our baby is incredible to us. It builds our faith
in humanity. This shows that Calgarians really do care about each
other.”
“That’s what radiothon is all about,” says Q107 afternoon host,
Lex Stephens. “We introduce our listeners to the amazing kids and
families who fill the beds and walk or wheel the hallways of the
“lego building” on the hill. And then we help everyone understand
that they are our neighbours, our co-workers, our friends...and we
can help change their lives. It’s the most rewarding thing we do all
year.”
Over the past eight years, radiothon listeners and sponsors have
donated more than $11 million to fund life-saving equipment,
programs and research at our hospital. This year’s Radiothon runs
February 8 - 10 from 6 am to 7 pm each day and will once again
feature the inspiring stories of courageous families and kids like
Sabina and Nyla.
Listen to the stories of the amazing children and
families who are benefitting from care at our hospital
- and generous support from our community!
Be a part of it!
You can help build the success – and the excitement –
around radiothon today… even before it hits the airwaves.
It’s easy!
1
Become a Miracle Maker by joining our amazing family of
monthly supporters.
2
Inspire your friends and families to help kids at the hospital!
Register yourself and/or a team to raise funds online. It’s as
simple as sending an email.
To learn more, go to www.kidsradiothon.com
Radiothon 2012 Phone Bank Sponsor
Radiothon is an initiative developed by the Children’s Miracle Network. Foresters
is proud to be the founding sponsor and international underwriter of this program.
Country music star, Paul Brandt, brings a smile to a
patient at last year’s Radiothon.
Lex Stephens (far left) says she’s inspired by
every kid and family she meets at Radiothon!

Emergency Expertise for Families
Imagine how helpless you’d
feel watching your child have
a grand mal seizure, knowing
that the nearest hospital able
to help her is hours away.
Did you know?
The Alberta Children’s Hospital cares
for children and families from across
Alberta, southwestern Saskatchewan and
southeastern British Columbia.
Despite handling many health issues
faced by her six-year-old daughter
since birth, Taralin Pegg felt totally
unprepared to cope with the seizures Gabi
began suffering two years ago.
“We really weren’t sure when or how to
give Gabi her medication when she was in
the middle of an epilepsy emergency,” says
Taralin who, along with her husband, Jamie,
and their five children, lives in Bracken,
Saskatchewan. “And since anti-seizure drugs
can cause breathing problems, it made us
worry even more.”
Thankfully, that’s all changed, now that
Taralin and Jamie were able to participate
in a world-first patient simulation training
program for families launched last fall at the
Alberta Children’s Hospital.
Community support helped to establish
the hospital’s patient simulation program
(KidSIM) in 2005. Since then, our KidSIM
team has become nationally-recognized
for their expertise in training healthcare
professionals on how to handle lifethreatening
medical emergencies. They’ve
conducted thousands of mock trauma and
resuscitation drills using mannequins which
mimic breathing, pulses, blood pressure,
speech and sound, all attempting to make
the training scenarios as realistic as possible
for participants.
“Having seen the tremendous benefit of
simulation for doctors, nurses, therapists
Thanks to help from the Alberta Children’s
Hospital, Gabi Pegg (centre) is able to be at
home enjoying time with her brothers and
sister.
and students, we decided to expand the
scope of our program to give back to the
community that supports us, in this case
to help families of children who suffer
from chronic diseases with the possibility
of acute deterioration – beginning with
seizures,” says Dr. Vincent Grant, Medical
Director of the KidSIM Program at our
hospital. “Managing your child’s seizure,
including administering rescue medication
to a child experiencing convulsions is a
difficult process – especially when the first
impulse is often to panic.”
“We are so grateful to the KidSIM team,”
says Taralin. “They taught us when to give
the medication, how to properly administer
it, let us act it out over and over until we
were comfortable, and then helped us draw
up a step-by-step plan for our family. It was
incredibly valuable and we feel a lot more
confident and prepared as a result.”
Our hospital’s Family Centred Care
Committee has keenly explored how
technology can be used to support families.
Simulation training for families is part of our
hospital’s focus on family-centred care.
“Since so much of a chronically-ill child’s
care happens at home, it makes sense to
provide parents with hands-on training,”
says Catherine Morrison, Manager of Family
Centred Care at our hospital. “We’re so
pleased that it’s making a difference for
families like the Peggs.”

Twice as Nice!
You can make double the difference for kids and families in your community
Your donation to the Alberta Children’s
Hospital may be able to have twice
the impact with a matching gift from your
employer!
More than 60 businesses in and around
Calgary have set up programs which
provide corporate matching gifts for every
dollar that their staff members donate to
our hospital.
For companies like ATCO, it’s something
everyone in the organization is proud
of. ATCO’s Employee Participating in
Communities (EPIC) Program helps
charities of their employees’ choosing –
including the Alberta Children’s Hospital.
“It’s been a wonderful way to engage and
involve all our ATCO employees in group
activities that are both fun and helpful
to others at the same time,” says Nancy
Southern, President & CEO, ATCO Group.
“The employees organize activities as simple
as bake sales to larger fundraising initiatives
such as online auctions, with hundreds of
items that are donated by our employees
and our business associates. The company
matches employee contributions dollar for
dollar and we truly believe our donations
are making a difference in the communities
we live and work in.”
In fact, over the years ATCO has made a
difference for children across many areas of
our hospital, with donations being directed
to help those with cancer and vision,
developmental, surgical and mobility issues.
The C.H. Riddell Family Movement
Assessment Centre is just one of the
areas which has benefitted from ATCO’s
generosity.
“Community support from ATCO and
other wonderful donors made it possible
for us to establish the first movement
assessment facility within a children’s hospital
in Alberta,” says Dr. Barbara Ramage, PhD,
Program Facilitator. “Hundreds of kids with
conditions like cerebral palsy, spina bifida,
ambulatory issues, metabolic and genetic
diseases have been helped at our centre.
The state-of-the-art technology funded by
donations helps physicians and surgeons
perform crucial testing which helps them
determine how best to proceed with
muscular or skeletal surgery and therapy.
“Having ATCO and our employees team up
to help kids has been very rewarding,” says
Ms. Southern. “Each of us either has children
or we know children who have relied on the
hospital at one time or another. We know
our donations and support are helping to
make the Alberta Children’s Hospital the
best it can be.”
If your company or business offers
a matching gift program and you
would like to be added to our list
or require additional information,
please contact Farzana Rajwani
at (403) 955-8825 or
email frajwani@achf.com.

Thank you for
an amazing night...
...and for filling our
hospital with even
more hope!
Thanks to everyone who made Candy
Cane Gala 2011 an incredible success!
Over $800,000 was raised to help save
and change the lives of babies and
toddlers by supporting ground-breaking
research and crucial care, giving our
youngest patients the very best chance for
happy and healthy lives.
On behalf of the one out of every two
babies born in southern Alberta who
will need the Alberta Children’s Hospital
before their first birthday, thank you for
your incredible support!
For pictures and more information, visit
www.candycanegala.com
PLATINUM SPONSORS:
GOLD SPONSORS:
Edco Financial Holdings Ltd.
MEDIA SPONSORS:
SILVER SPONSORS:
BMO Bank of Montreal
EllisDon Construction Services Inc.
Evolution Presentation Technologies
FirstEnergy Capital Corp.
Grafton Capital Corporation
Interlock Industries (Alberta) Ltd.
Oil City Press Ltd.
Principals of Peters & Co. Limited
TransCanada Corporation
TD Bank Group
.
Upcoming Events!
Mark your calendar for some wonderful
ways you can help the kids at the Alberta
Children’s Hospital!
February 8 - 10
Country 105/Q107
Caring for Kids Radiothon
March 23 - 25
Kids Play 4 Kids
Charity Hockey Tournament
www.kidsplay4kids.com
May
Miracle Month of May
(Costco, Walmart and TD)
May
ATB Teddy for a Toonie campaign
May 5
Sunshine Gala
www.childrenshospital.ab.ca/
sunshine_gala
May 6 - 16
2012 Oilympics Hockey Marathon
www.hockeymarathon.com
May 30
Family of Hope Tea
June 10
Walmart Walk for Miracles
July 26
DQ Miracle Treat Day
For complete information about all
of the above events, please visit our
website at www.childrenshospital.ab.ca.
2888 Shaganappi Trail NW
Calgary, AB T3B 6A8
T 403-955-8818
F 403-955-8840
Toll Free 1-877-715-KIDS (5437)
www.childrenshospital.ab.ca