Ethan de Neve Age: 7 yrs Received Grant: July 31, 2008
I am writing this letter to introduce my son Ethan de Neve to you. Ethan was born on February 21, 2001, one hour and 17 minutes after his twin brother, Andrew entered the world. They both surprised us by arriving 2 moths early but did well and got to go home after 6 weeks in the NICU. Both boys were also born with P.F.F.D. (Proximal femoral Focal Deficiency): However, Andrew has only a mild form of it. One in every 50,000 babies is born with this and no one knows what causes it. Basically, one leg is very short, especially the femur, and all the bones in that let are also much smaller than the other leg. This condition, in most cases, also includes a deformity in the hip. Some children are even born without a hip but thankfully, Ethan was born with a hip, it was just completely turned sideways and had no socket to even go into. The foot on his little leg comes to just below his big leg's knee and he has worn prosthesis to help him walk since he was a year old. When he was 5 years old he had major hip surgery to straighten his hip but since there is no socket for it to go into it is currently just floating around in that area. After countless hours in therapy, he was able to learn to walk again but still gets very tired and cannot walk more than 10 minutes before having to stop because of pain in his hip and pure exhaustion.
Ethan is a sweet, fun, energetic, and competitive 7-year-old boy who is so determined to do what everyone else thought he would never do. Since he loves to play outside with his brother, we have tried converting big wheels, special scooters, and two wheeled bikes but he hasn't been able to ride any of them. His hip just will not move in that way to pedal and scooters completely tire him out after a few minutes since he is standing and supporting his hip the whole time. He has grown very frustrated (partly because he is trying to keep up with his brother) and we have about given up on trying to do active things together as a family. If we are all biking, running, he cannot join in unless he is being pushed in his special jogging stroller and that is just not much fun for him. Plus, he really needs an outlet to get some good exercise. His upper body has always been extra strong because he has had to compensate for the lack of stability in his lower half.
Recently my husband and I had been talking about what we could get him on that he would not have to rely on his legs to move. The very next day Road Runner Sports catalog came in the mail with a picture on the front of a boy riding a hand bike. We couldn't believe it and started researching online to find out as much as we could. The price definitely scared us but we wanted to at lease try it out. We could not find one anywhere for him to try out but a couple weeks later while at Road Runner Sports shopping for shoes, the boys fond one displayed at the front of the store for a fundraiser for AHA. Ethan immediately climbed on it and tried to start riding it around the store. Because there was not much room in the store, he of course could not move it but a few feet.. Thankfully, a nice employee asked if we wanted to try it out in the parking lot. We were so excited! They took it out there and Ethan climbed on and took off. At first, I started walking next to him, then I was jogging, and suddenly I was sprinting to try to keep up with him. I have never seen such a big smile on my son's face, nor have I ever seen him make himself move that fast on wheels! I was actually getting choked up as I ran to keep up with him. It was definitely a moment I will never forget.
Ever since that day Ethan has been talking non-stop about getting a hand bike. He even has started telling everyone he runs into about it. We have told him all along that they are pretty expensive and we are trying to find a way to afford one. Then his prosthetist informed us about your grant program and told us we should look into it.
After reading all about your program and what you are able to do for so many great kids, we are honored that you would take the time to hear about our son. For Ethan to have a hand bike would be an amazing thing. Tonight he came in and said, "You know momma, I am actually glad to have a little leg because if I had two long legs I would have to ride a regular bike and never get to maybe have a hand bike. I am glad God made me be the one to have a little leg!" Tears came to my eyes, He has never before said that he was thankful for his disability and to hear him take that perspective on his situation was awesome. We would love for him to be considered for this program. Thank you for letting us tell his story.