Hi Family,
About a year ago we wrote a letter to a family that lives in Utah that has four children with Rigid Spine Muscular Dystrophy. We found out about them through a Research paper we found on the internet. We contacted the researching doctor, and he put us in contact with the family. We finally received a letter from them. It was quite a moving experience, and hearing about their problems, and joys, trials, and love made for a very emotional read. The saddest part was to hear that two of their children died this year. It opened me and Jasmines eyes to the sad situation we are in.
Rigid Spine Muscular Dystrophy is so rare (only 10 cases in all of Australia) and few in the US. This makes it very hard to get correct, current, and specific information about what our kids are going through. I thought this letter would help give you an Idea of what we expect for our kids. For those of you who don't know, Phoenix has a much worse scoliosis than Isis. This means Spinal Surgery sooner in life than expected.
(Nick asked me to un-post the photo and letter...they haven't written back to them yet and it might not be appropriate--so it has been deleted)
