What the Segway has done for Sammy
MPS 1 – Hurler Syndrome
Sam was diagnosed at nine months of age with the genetic metabolic disease of MPS1-Hurler Syndrome. His body was missing an enzyme that breaks down sugar molecules, causing them to store in every organ and bone of the body, causing death typically between the age of two to five years. Sam underwent a perfectly matched sibling bone marrow transplant right after his first birthday to save his life. His body now makes the enzyme which prevents the molecules from storing in his organs, however, the enzyme does not get into the bones. Sam has undergone ten surgeries due to the problems with his bones, including C1-C2 fusion in his neck, spine surgery, complete foot re-construction, complete hip re-construction, and knee stapling to name a few.
It is extremely difficult for Sam to walk even short distances with his bone structure, and the Segway has changed his life in such a positive way. He can now ride around the block when we go for walks. We bring the Segway any time we go on day trips that will involve walking distances. He has attended Make a Wish Golf Tournaments, college trips with his sister, and various other events without limping, getting tired, or having to be carried. Since Sam is now 14 years old, being carried is no longer an option. Sam is already self-conscious about his short stature and the fact that he is small enough to be carried would only emphasize that. The Segway is very easy for him to maneuver, and it has given him independence and confidence. Sam and his parents are so thankful to Easter Seals, ES Riders, staff and students at McKelvie Intermediate School, and everyone involved in helping to make this happen for him.
January 19, 2009
I was so excited the day that I got my Segway! It was easy to get used to it because when I first rode it, it seemed very easy to ride. My knees and hips and feet always hurt when I had to walk even kind of a long way, but now I have the Segway and it is so much better! I brought it to Old Town Day, College campuses, Make A Wish outings, weekends away, and I ride it around my circle when my parents walk.
Thank you so much again, and I like being part of the group ES Riders. As soon as I can get on my feet steady again, I will ride it every day! I can’t wait for the next ES Riders Walk. – Sam Caswell