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Hi! My name is . I have 3 1/2 year old identical twins. I just found out

Monday night that they have been diagnosed with CMT 2D w/dSMA type V. Right now

I am really just in shock and don't know what to think. My emotions are a

complete roller coster with no end.

 

Essentially we have been working with our Neuro-muscular Specialist since the

girls were about 18 months old. She is from the University of Iowa and the head

of the department. We have been running test after test and finally I called her

and told her to run every test known to man since we had met our annual

deductible with our insurance. She ran the CMT gene test on a whim thinking it

would be like all of the other tests and would come back negative.

Well low and behold, it was positive. So...I guess I am looking for any and all

information others can provide me.

 

Thank you for listening and I hope to get some helpful information.

  

Mother to Ashlee Rayne & Aimee Renae

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