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.

My parents were quick to realize this was going to be a life-long challenge

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 can be more active and need not take as many rest periods

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, which is hockey.

In the year 2000, we found a specialist at the Children's Hospital in Boston and most of my surgeries since then have been in Boston. I've now had more than 40 operations, but not everything is fixed just yet - more surgery is needed.

After a recent visit to Boston I was informed that I am the 50th of approx 100 confirmed cases of a disease consisting of a blood vessel and muscle disorder. However there has yet to be a name stamped on the disorder and research is still underway. Although there is nothing to tell us what to expect in the future, I am hoping that my job as a personal trainer in Ottawa will allow me to stay on top of my health as I try to play doctor.

I do not enjoy traveling out of the country for treatment because it makes the whole situation that much worse. Although, I have seen positive results from all of the operations I have endured. And while I still have problems time to time, for the most part, I am well and loving life.

Fund raising gives me a tremendous sense of satisfaction and fulfillment

I am now in my twenties and even though I am no longer eligible for treatment at CHEO, I plan to continue my fund raising efforts for that hospital.

I am out in the business world these days. I still 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. And then, of course, there is the fund raising, which gives me a tremendous sense of satisfaction and fulfillment.

When I started raising funds in 2002, I was focused on buying a Holmium laser for the operating room. But in the Spring of 2008, folks from the CHEO Foundation told me they would like to purchase a different piece of equipment - something that would be of greater use to more children. My original goal was to raise $200,000.00 for a laser that in reality, would only help a few kids a year, so my response was, "If it's going to help more children, buy it."

Buy it they did! And they invited me to see the apparatus first hand. When I walked into the operating room that day and saw the equipment they had bought with money from the Ryan Williams Fund, it gave me a feeling I've never had before. I can honestly say it was the first time I felt I had made a difference. That feeling truly inspired me and gave me the confidence to keep going strong for a hospital that is always there when it's needed.

In the beginning, I just had a simple desire to give back. But now, I realize the Ryan Williams Fund has too much potential to just call it quits. After forming a committee with some great volunteers, everything has really come together. And it has been extremely rewarding to see how our fund raising efforts have resulted in the purchase of new equipment at CHEO.

It's the support from my community that brought this equipment to the hospital

Every week, these new additions help dozens of children, who otherwise might be forced to travel to other cities for treatment. From personal experience, I know what it is like to leave home and be out of my comfort zone and how that ultimately results in a much more stressful recovery. The kids at CHEO are truly benefitting from the new equipment.

It is the support from my community that brought this equipment to the hospital. The generous and happy giving I have seen from my entire community has touched me deeply, and I will be forever proud to call Winchester my home!