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 20 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 fund raising efforts on behalf of CHEO, even though I am no longer eligible for treatment at that hospital.