I am a 29 year old wife, mom, & step mom. I have a wonderful step son & 2 beautiful daughters. This syndrome is very rare however it is hereditary. My husband, 13yr old step son & my 4 yr old daughter all have this syndrome. My step son has had over 20 surgeries & my daughter has had 8 surgeries & still has more to go. I am trying to reach out to other familes that might also have this syndrome to see what treatments they may have used - if they are the same or different than what we have done.