I was reading through my GSDnet emails when I came across an email from David Hamlin. In his email David is sharing the progress of his son Eric with Myozyme and a whole lot of exercise. He posted some videos on the “United Pompe Foundation”:http://www.unitedpompe.com web site. I checked it out and what I saw had me nearly in tears.
Awesome. That’s the word I’d use to describe David, Eric and the rest of the Hamlin family. It was through their collective effort and of course the people at Genzyme who brought us Myozyme that Eric is doing as well as he is right now.
Eric hasn’t been able to walk since 2001. He started with Enzyme Replacment Therapy April 2004. 11 months after progress was more evident. Now, Eric is taking his first steps with a walker. That rocks!!!
Pompe has slowly ravaged the bodies of people unlucky enough to get afflicted with it. Myozyme works but it does take time. This is evident with Eric’s case. It took awhile before significant progress was made. It took years to destroy the muscles, it will take years as well to repair it.
I guess the key to all of this is managing expectations. I understand that Myozyme is not a miracle drug. I understand that each patient will differ in the progress he/she makes. I also understand that it will take patience, hardwork and determination. I should learn a thing or two from Eric.
Go watch the videos “here”:http://www.unitedpompe.com/VIDEOS.cfm.