"1) Austin has Duplication 53-60
2) Non-mobile, wheelchair all the time. Can still eat and drink on his own but does need help dressing and washing hair.
3) Austin takes Lisinopril, Carvedilol, and Spirinolactone for heart meds (heart…"
"Austin is 14 and has duplication of exons 53-60. He quit walking when he was 11 and can't stand at all. He started heart meds in August this year due to scarring and decreased heart function. He has two physical therapists and…"
I am the mother of 4 wonderful children, one of which is my son with Duchenne. I am engaged to a great man and I am a welder and work full time.
About my family:
My Fiance and I have Austin, who is 9 and has Duchenne. We have two 13 yr old girls, Alexis and Calllie and another 9yr old boy, Dillon. Austin is the only child in our family with DMD, we're not sure yet if my daughter and I are carriers or not.
Name(s) of child(ren)/individual(s) with Duchenne:
Hi Ana, sorry it took me awhile to get back with you. Yes my son used to do the same thing, about 3-6 months before he went into a wheelchair full time. It would scare the crap out of me and I would worry about him, then the next day he was fine. As time went on he would have more and more times when it seamed his legs just kinda "gave out" on him. That's when we decided to have him use his wheechair more so he wouldn't fall and hurt himself. Good luck with this, I know it's hard.
We saw a therapist today, he is deciding what meds will be best for Tyler. Yeah my son talks non stop and is very OCD I think. I aften wonder if that is part of the DMD, or just something else he's been blessed to have LOL. It's nice know their are other children out there like mine and other parents going through the same adventure every day! :)