My son was diagnosed at 16 months by a DNA test. His father, grandfather, greatgrandfather, and several paternal uncles have the disorder. It has affected my 9 1/2 yr old son more than his 32 yr old father. We go through a lot between wearing AFO braces, being the not so great athletic kiddo even though he tries his hardest, etc... He sees a neurologist in maine because our current insurance won't pay for us to go outside the state. You can research the disorder on the CMTA.org website (i think it's .org) The disorder is part of the muscular dystrophies so it is also found on that nation website as well. I do know that my ex husbands family has 2 female carries but non that are symptomatic. I did have my daughter DNA tested when she was born which resulted in a neg test. There are 5 CMT clinics in the US. They are listed on the CMTA website. I know the one closest to me is at the John Hopkins University in MD. Their website would be helpful too. I hope this info is helpful and good luck.