Jeannie
I have a son, now 24, who was diagnosised at 7. Few doctors recognized this syndrome and many denied the diagnosis. Basically we have lived by trial and error. Bryan is an excellent example of "white men can't jump". His feet can't leave the ground safely. He doesn't do well on uneven ground. He wore hightop shoes growing up and we did everything possible to protect his ankles, where he has the most problems. He'll never be an athlete but is a gifted artist and web designer. You learn to live life one day at a time and ignore "well meaning" family and medical professionals who don't know what they are talking about. You use a lot of common sense and live every day as "normally" as possible. In other words don't overly baby, make your grandaughter feel handicapped, or put them in a bubble. Children will test their limits but they have to live life and enjoy it to the fullest, whatever those limits prove to be. I've found far more recently on the internet than we ever were told or given information on this syndrome. To our knowledge we don't have other members of either side of our families with this syndrome. The only similarity doctors ever pointed out was that both my son and I are double jointed. Bryan is extremely agile for his large size. Hope this helps.