Hi Kate, my daughters do not receive disability. They both walk, just have a lot of fatigue and soreness if they do too much. Kt we just found out Friday at ortho visit is very tight on her right side. so, when she swims her arms and upper torso are straight, but it pulls her hips to the side, which makes her swim with her legs out to the side. It's amazing she goes anywhere! It is a struggle especially when they look at you like your nuts, but we will keep on fighting to get the help they need! My daughter is tall for her age, she'd be about 2 inches taller if her back was right, is your Libby tall also? Does she have any problems with lumbar lordosis? Yes, I would like to keep in touch, Hugs!
Hi Kate, nice to hear from you! I have to say tho, that there's not much known yet about girls with this. We know progression is slower in most cases. My girls are fatigued easily, we have strollers for long distances or time consuming things like grocery shopping or malls. They complain of cramps in legs, are weaker and slower than their peers, have lumbar lordosis and other issues. Kt has orthotics she has to wear every day and shoe inserts that really help her trip less. They both have stretching and strengthening exercises that are also done every day. Other than that, it's pretty much a wait and watch scenario that can be fustrating at times. How old is your daughter? Deletions or duplications of exxons mess up the reading frame and make it so it can't be read right. I had found a good site that explained it well, I'll try to find it again and send it to you. Hang in there! Sincerely, Sherri