Dylan’s Story
Our son Dylan was diagnosed with biliary atresia at the tender age of 8
weeks. My intuition told me in the early weeks that something wasn’t
right, but despite others telling me everything was normal, I decided to
take him to my doctor and have my doctor see him instead of me for my
postpartum check up. She immediately identified something was off and
sent us for a blood test. That same day we received a call from my doctor
to go to the Alberta Children’s Hospital immediately. That day our lives
turned upside down. After multiple tests and scans and eventually a
biopsy to confirm the doctors’ suspicions, it was concluded that Dylan
had biliary atresia. His liver was not working properly and he needed to
have surgery [the Kasai procedure] to establish bile flow.
I remember the day of the Kasai procedure vividly. The nurse took my
little baby from my arms and headed to the operating room. Dylan
looked at me with his big eyes and cute little face and gave me a little
smile. He did not cry. He was the bravest baby I had ever known. From
that day forward, he taught us -- and continues to teach us -- that strength
comes from within and to smile and be grateful.
To help Dylan and other children
like him, CLF has partnered with
the Flames for Life Foundation to
raise funds for children’s liver
disease research. The Flames for
Life Foundation will match
donations received by July 24 up
to $10,000.
Help us score against children’s
liver disease. Donate today!
I remember thinking, If my little baby can be brave in the face of uncertainty, the least we can do is help him in
this fight. We got involved with the Canadian Liver Foundation in 2007 by participating in their very first Stroll
for Liver. We were trying to seek out a community where we could find comfort and support in others who were
experiencing the same thing. We realized early on that we would be living a different “normal”, and finding that
support from the community was something we embraced. The unbelievable strength and courage Dylan has
shown us, as well as those we have met along the way, has given us so much hope.
Today Dylan is 9 ½ years old. He is a big brother to
three other siblings and is a sensitive, happy and easy
going boy. For him, ‘normal life’ consists of
medication every day, regular doctor visits, blood tests
to check on his liver and spleen and yearly
ultrasounds. Even though his liver enzyme levels are
not within the normal range, he is considered stable.
As a result of this progressive and chronic disease, his
spleen has become enlarged. Dylan’s condition has
actually become a learning opportunity for future
doctors. He participates in the exams for medical
students at the University of Calgary during which
they must examine him as a patient and try to identify
3100 Steeles Avenue East, Suite 801, Markham, ON L3R 8T3 • 416 491-3353 • Toll Free: 1 800 563-5483 • Fax: 905 752-1540
Canadian Charitable Registration No. 10686 2949 RR0001
his splenomegaly [medical term for an enlarged spleen]. Dylan wants to participate to promote awareness within the
medical community but I also think he likes the Chapters gift card he receives as a thank you at the end.
Dylan is completing his 4th grade at school and loves to ski, dance, bike and play soccer. Although we had to pull
him out of competitive soccer because of his spleen getting bigger, he still finds joy in playing a few games during
recess at school.
We continue to participate in the Stroll for Liver every year because we want to support ongoing research. The
reality is biliary atresia is a rare disease. It is progressive and chronic. It has no cure. In order for us to affect
change and support advancements, we need to start a dialogue and pull together as a community to work together
to bring this rare disease to the forefront. Seeing other children, especially teenagers, thriving has given us hope.
We no longer feel alone in this experience and can draw support from others who have gone through the same
thing.
The CLF invites you to be part of a power play against children’s liver disease with the Calgary Flames. The
Flames for Life Foundation match donations to children’s liver disease research received by July 24 up to
$10,000.
Help us score against children’s liver disease. Click to donate today or visit www.liver.ca/Flamesmatch
3100 Steeles Avenue East, Suite 801, Markham, ON L3R 8T3 • 416 491-3353 • Toll Free: 1 800 563-5483 • Fax: 905 752-1540
Canadian Charitable Registration No. 10686 2949 RR0001