The Saundercook family, at least some of us – there were 10 – we are watching one of our favorite shows, ‘Marcus Welby, M.D’. To our amazement the subject of the week’s episode, back in the 70’s, was Dystonia! It was portrayed as something too disturbing for family TV. All that was shown, as I try and recall, we’re the parents of a child, and I guess the Dr. himself, looking down into a crib where a young boy lay, unable to control the involuntary movement of his limbs and the contortions of his spine that twisted his body. This was an extreme case of Dystonia and this was the kind of Dystonia that hindered my brother Chuck who, over the span of a just couple of years, had lost his ability to walk, to talk, to feed himself or go the bathroom alone.
I stood watching the whole show, not moving a muscle, close to Chuck lying on the floor, moving all kinds of muscles, uncontrollably. To our further amazement, the show was based on a non-fictional account of a real case of Dystonia, and an attribution made to a Dr. Katz at a New York hospital who was researching this virtually unknown disease. Eventually this led us to Dr. Taster at Toronto General Hospital.
That was it! In a flash we had hope…and a contact number.
This was the beginning of our family journey into the world of Dystonia research and fundraising. Along the way we came to realize that there were different types of Dystonia, in each case, a milder affliction than what Chuck hads, but no less agonizing for the many victims who also suffered the indignity of having an unknown disease.
Thanks to many Dystonia sufferers, their families, friends, and many volunteers, this has changed and changed dramatically for the good. It started with a 24-hour swim marathon that we hosted in our narrow backyard swimming pool that raised thousands of dollars, and more importantly, awareness, as the event was featured on the front page of the Toronto Sun in the summer of 1979. Years later, the Chuck Saundercook swim marathon was revived as Chuck’s Run, Walk and Wheel 5 KM for Dystonia and it thrives today as a major fundraising initiative raising funds for the Dystonia Medical Research Foundation and dedicated to Chuck Saundercook.
Chuck was special to our family because he was ours, and because of the positive spirit he embodied throughout most of his 17 years, when he finally succumbed to pneumonia caused by the underlying, very unwell, condition of his ravaged body.
The photo below is one or our favourites. It was the last time Chuck was able to pull himself up off the floor onto a chair. It was an amazing feat, and we were so proud of the will he showed in getting it done that day. His last act of kindness was donating his body and brain to help others in furthering dystonia research.
On behalf of the Dystonia Medical Research Foundation Canada, and the Saundercook family, our heartfelt thanks to those of you who are supporting this year’s Freedom to Move: Run, Walk and Wheel for Dystonia.
