By Kim Hoag:
Our family started the Alex Run in 2001 in memory of Alex. The decision to start this event was not an easy one. It would have been much easier to give into grief and give up on our quest for a cure.
After all we had lost the battle.
A year after his birth in 1990, Alex was diagnosed with Proteus Syndrome (PS). This is a disease you do not want to hear as a parent. There was very little known about the syndrome and what was known was horrifying.
As a young child we watched helplessly while his bones overgrew and his joints became bent and unmovable. Major surgeries became a part of Alex’s life to keep him as mobile as possible. Attending school, going camping, going to the ocean, and taking each day as it came, made his life normal.
As a 9-year-old boy in 3rd grade at Vera Scott Elementary in Colorado Springs, Alex enjoyed the noise of a loud Harley Davidson, the beat of a good song, his friends, his family and he especially enjoyed sitting in his wheelchair in the sunshine and spinning in circles.
A special gift he brought to the many people whose lives he touched was his wonderful sense of humor and his playful laughter.
He never complained about being confined to a wheelchair, or the limitations of his life due to Proteus Syndrome. His strength was amazing and inspirational. We always believed that Alex would continue to defy the odds and live a long happy life. However Proteus syndrome had something else in mind. In the form of a pulmonary embolism, a complication of PS Alex died unexpectedly on a rainy Monday afternoon.
Alex was a son and a brother in our family. What we discovered after he died was unexpected to our family. We received hundreds and hundreds of letters, email and phone calls from people we had never met who had come to know our family from numerous newspaper articles about his struggles.
Alex had unknowingly to us become an inspiration for many people.
He inspired researchers at the National Institutes of Health to continue working to find the cause of this disease, he inspired people to hold their head up and be strong in the face of adversity, he inspired children who didn’t know about special needs to understand and advocate for people with different needs.
He was bigger than we, as his family, understood. To us he was just the kid who got in trouble, sometimes didn’t mind, fought with his brothers, had more than his fair share of problems but in general was just one of us.
When we understood the significance of his life we, as a family, we decided to carry on and continue to raise money for the Proteus Syndrome Foundation to find the cause of and cure for this disease.
Take a look around when you come to the race. The volunteers are Alex’s teachers, school friends who are now grown, parents of his school friends and his family. They volunteer because they remember Alex and they have a special place in their hearts that will only be filled when we find the cure for Proteus syndrome.
In honor of Alex’s memory his family and friends will continue to battle Proteus Syndrome until a cure can be found.
We might have lost the battle but we will not lose the war!
