Shane Terry Searching for a Cure for Fibrodysplasia Ossificans Progressiva (FOP)

Shane is a five year old boy that was diagnosed with F.O.P in May of 2008.  
F.O.P. is a debilitating genetic disorder that turns tissue into bone.
Without a cure Shane could become immobile.  
He has already had trauma to both shoulders, as a result bone growth has occurred which has limited the use of his arms and neck.