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My introduction and my son's

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Hi everyone,

As promised, here are my introduction and that of my son. I

am a lawyer, single, 44, and I live in NJ. Over the last eight

years I have adopted six orphans from Eastern Europe: four from

Russia and two (just last week) from Estonia.

One of my children, now 10, has, over the past few months,

been diagnosed with CMT. When I first saw him in the orphanage at

age eight I noticed that he had high arches. Last year he

complained about pain in his feet after soccer games. That was

originally diagnosed as the result of a detached growth plate in a

bone in his foot. I mentioned the issue again at his annual

physical in the Fall and that led to the current diagnosis. We're

still not sure what type (though it's probably 1a) because the lab

lost the first blood sample submitted, the hospital put the second

sample in the wrong tubes and the third sample was just sent in two

weeks ago.

Although he spent 5 years in the Russian orphanage, he

emerged as one of those exceptional orphans whom experts classify

as " resilient rascals " because they manage to thrive despite

deprivations that severely damage other children.

A terrific peacemaker, he has tremendous patience with young

children and I sometimes see him growing up to be a child

psychologist, though the pastor of our church wants him to be the

pastor's successor. He is tall and strikingly handsome with huge

blue eyes, blond hair and a great smile. He has many friends: he

started his best friendship his first day in school in America even

though he didn't speak a word of English!.

He plays basketball and soccer though he often has a low

opinion of his own performance (it doesn't help that his 9 year old

brother is an exceptional athlete). He is quite good at swimming

and also enjoys karate and tennis. Sunday he was climbing the tree

in our front yard. Clearly his case of CMT is still mild. In fact,

no one ,except a few coaches and I, has noticed anything wrong.

Back in November his hamstrings and Achille's tendons were really

tight but once I knew what was going on and began doing stretching

with him (I have plantar fascitis not due to CMT) he regained normal

flexibility. Balance was an issue on winter ice and we do regular

balance exercises as well as dorsiflexion and eversion exercises.

I want to thank all the members of the group for sharing

their experiences. Special thanks to Gretchen who so thoroughly

keeps up on research and investigates things that people are amazed

on how current I am on things. Her tireless efforts have made me

wonder whether fatigue can really be associated with CMT!

Bob

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