Just saw your private message today and replied thru that. I don't mind letting you know what I remember. The oldest son wasn't officially diagnosed until later in the disease. He walked until he was 8 or 9. Once he broke his leg that was it for the walking. He went into a wheelchair. He went to school every day but once the lower body lost control then the upper body lost control pretty quickly. His chest got barrell shaped with not much fat or cushion. No oxygen, feeding tubes or anything. Mostly skin and bones. He needed to be lifted, changed, fed and helped with everything. He died immediately from heart failure after completing a day at school. He was 13. the second son went a little longer. We saw him walking Ok. Then he'd fall and pick himself up on his own. Then he'd fall and we'd have to pick him up. Then it got to where there was no more walking. His body started to look just like his older brother's had, barrell chested and loss of upper control pretty quickly. He had to have a breathing machine at night just to help him keep his collapsed lung going. No feeding tubes but more liquid nourishmnet required. Couldn't even scratch his nose at the end. Full of pain every where and touching him hurt him a lot. He died pretty much from just his body wearing out. He was 16. Youngest son seems to have gone a little slower. He's in a motorized wheelchair but there are signs of loss of upper body control. He attends school. He is 14 years old. Has to be watched for pneumonia which would dramatically bring his health down quickly. Beginning to look like both older brothers as far as body and muscle control.
