My name is Ryan Williams and
this is my story. As you read this, please understand that I am not looking
for sympathy. I actually feel pretty good about life – thanks to my loving
parents and the support I have received from the fine people at the
Children’s Hospital of Eastern Ontario (CHEO), many of whom have become
good friends over the years.
I am now 19 years old and live
in a small town called Winchester, about 30 minutes south of Ottawa. I never
knew what it is like to be a so-called normal child, or at least,
a child with no pain. I have Klippel Trenaunay Webber Syndrome (KTWS), a
rare disorder that has resulted in the improper formation of blood vessels -
mostly in my right leg and some internal organs.
I was still in diapers when
I was rushed to CHEO for the first time to receive treatment for spontaneous
bleeding. My case had doctors baffled. Then, at the age of 3, after 4 or 5
operations, a diagnosis was made. However, my
parents were told that there was no known cure for KTWS. No literature
on KTWS could be found, nor was there another case close to mine that
could be used as reference. I was unique. My parents were quick to realize
this was going to be a life-long challenge.
With growth and weight
increase, more pressure to the malformed vessels throughout my body caused
a lot more pain - mostly in my leg. At school, it became difficult to keep up with my friends
during recess and for the first time, I was starting to feel ‘different.’
I would try so hard during the
day to keep up and to be included in sports and would end up going home and
having to wrap my leg in warm towels to soothe the pain. Even grocery
shopping with my Mom was difficult because of the walking.
I now wear a custom-made
stocking to support the blood vessels in my leg. It does not eliminate the
throbbing, but it does help a lot. I can be more active and need not take
as many rest periods. I can even participate in my favourite sport - hockey.
In the year 2000,
we found a specialist at the Children’s Hospital in Boston and most of my
surgeries over the past 7 years have been in Boston. I’ve now had more than 30
operations, but not everything is fixed just yet – more surgery is needed.
I do not enjoy
traveling out of the country for treatment because it makes the whole
situation that much worse. I find myself in a hospital amongst strangers
and I miss the folks at CHEO. Thankfully, I have received a great deal of
support from my parents and friends.
But I've been seeing some positive results
from all of the operations I have endured. I like to think I have reached the point where
I can now call myself an average teenager - I love getting into a game of hockey during
the winter, I go camping with friends in the summer and I like to play the drums. I also
have a part-time job at the Cloverdale Links Golf Course. And then, of course, there is the
fund raising, which gives me a tremendous sense of satisfaction and fulfillment.
After graduating from high school in 2007,
I enrolled at Algonquin College in Ottawa and I am pursuing studies in public relations.
I plan to continue my fundraising efforts on behalf of CHEO, even though I am no longer
eligible for treatment at that hospital.
BELOW ARE SOME OF THE
MAJOR SPONSORS BEHIND THE 2008 DRIVE FOR
CHEO
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