"Our sons are both 15 and they are at different stages of how they perceive why they are living unlike other kids. We have always played it "by ear," as they say or on a need to know basis keeping explanations simple when…"
"Hi, Our boys are 15, both with genetically confirmed Duchennes. When they were in grade school we requested each of them to have a para-professional assigned to them for assisting with school work and toileting. When they became…"
Keith and Michael are 6 yrs old. Their genetic mutation is a duplication of exon 8,9. Their father and I have decided not to administer steroids as a therapy. There may be a place for them if any upcoming trials need children with no prior steroid use. Let us know.
Name(s) of child(ren)/individual(s) with Duchenne: