Cathy
Hi, My name is Cathy and I am 34, my best friend died of FA a few years back and so did her brother. She was diagnosed i think the same age your daughter was, i remember running with her in Kindergarten and her legs would kick out. By 4th grade she had a back brace and by junior high she was in a wheelchair. Mentally she was completely there all the way up to her death, i was with her when she died. I know she lived longer than they thought she would. Her parents are the greatest parents in the world and i know without a doubt they would be the best resource for you to talk to. You really need to contact them. Jess and Carol Phipps- jphipps@ainet.com