First Time to Post - Hello Everyone!

[Guest guest]

I have been reading everyone's posts to this board and find them very

interesting. I have a son, 16, who has CMT. He had surgery three

years ago and his feet have begun to roll inward again even with

AFO's and his ortho has advised more surgery soon. It is very

difficult to deal with this disease and I find inspiration listening

to all of you who find positive ways to handle your day to day

lives. I would be interested in any information anyone can share

regarding what medications have been most helpful to them as well as

any info regarding SSI and your experience with trying to get

disability benefits for your children. I have been denied twice and

am wondering if I should appeal? I am a single wage earner in the

home...my husband has advanced liver disease and is unable to work

also. Again...thanks for your inspiration...it's nice to finally

find a way to connect with others who are dealing with this and their

positive approaches!