Jason is a 16 year old young man that has been diagnosed since 2006 with a a rare form of muscular dystrophy called emery dreifuss.
(PRWEB) November 08, 2012
Jason is a 16 year old young man that has been diagnosed since 2006 with a a rare form of muscular dystrophy called emery dreifuss. Through it all, this inspiring story sheds light on a strong family, friends, and community coming together in order to support.
Among the earliest features of this disorder are joint deformities, which restrict the movement of certain joints. These joint deformities become noticeable in early childhood to teenage years and most often involve the elbows, ankles, and neck. Most affected individuals also experience slowly progressive muscle weakness and wasting, beginning in muscles of the upper arms and lower legs and progressing to muscles in the shoulders and hips. A power chair or scooter or wheelchair may be needed by adulthood.
Almost all people with Emery–Dreifuss muscular dystrophy have heart problems by adulthood and Jason is no stranger to this as he was also diagnosed with Atrial Flutter and the second Complete heart block.
Jason's community has put together a site on GiveForward called Jason's Hope. Their goal is to help out with his deductible on some of his meds (one of which is $500/mo). He also has a Facebook fan page called 16 and Still Smiling to share his experiences.