Conor was diagnosed with Ullrich Muscular Dystrophy at age 7. It is a rare form of Muscular Dystrophy that typically affects the lungs and causes scoliosis and contractures. Although originally thought that Conor had a mild case in the beginning and would continue to walk and lead a normal life, it has not gone that direction.
Conor stopped walking just before 6th grade. The last 2 years have been tough on all of us, but mostly him. He has formed contractures in his knees and elbows and recently had rods put into his back for scoliosis. His lung function is now down to about 29%. We thankfully do have a 2006 minivan. This is the only car we are able to get him in and out of at this time due to the contractures in his knees. My kids go to a private school with no bus service, so we drive them back and forth daily. We have to lift my son in and out of the front seat.
Conor has mostly chosen not to leave the house except for school. The lifting, pushing and pulling to get him in and out of a car has become too much for him. He says it hurts him and is scared that we are going to get hurt also. We would love to have an accessible van that he can roll into so we can do things together as a family again.