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Re: Tana

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Hi Tana

a from Oregon here. I have a 13 yo daughter who has been diagnosed with

CMT since she was 8. It took us parents a year or so to figure out

" something " was wrong and get her help. I, too, believe like others who have

responded that she was blessed to not have Duchenne MD or a killer. That is

not to say it is not hard, it is. I wept for her losses and still do when

something becomes difficult for her. But, my husband and I are grateful she

is alive. She has developed a backbone and an unbelievable patience for

people. She wants to be a psychologist and help others less " fortunate " than

her. Pretty amazing that she thinks of others in her situation. We struggle

with clothes, shoes, you name it. BUT, she is alive and I thank my creator

for that. I thank God for her and all she has brought to our lives.

Yes, we get sad and it does break our hearts. You know, we also have a 17 yo

without CMT and his struggles break our heart too, just in a different way.

So hang in there and listen to all the wonderful people that are willing to

share their lives, struggles and wisdom with us parents. I have met some

great people through this service.

a

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