Gretchen Letteney
  • Female
  • Fitchburg, MA
  • United States
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About my family:
My son, Jim, is 20 and has DMD. I have a daughter with autism and epilepsy also.
Name(s) of child(ren)/individual(s) with Duchenne:
Jim
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
Fitchburg, Massachusetts

Gretchen Letteney's Blog

A Brave Young Man

Posted on August 22, 2009 at 7:12pm 8 Comments

My son, Jim Letteney, died on July 30th. He was only 21 and had cardiomyopathy due to the Duchenne MD. His heart lasted longer than anyone thought. I was with him. He passed away at home. Jim was very inspirational and brave. He never complained and was an optimistic young man. He did talk about feeling sad about having DMD and he would say that it wasn't fair that he had it. He asked me quite often if we had done everything that we could to help him. It wasn't fair that he or anyone else has… Continue

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At 2:54pm on June 6, 2008, cindy q said…
Hi Gretchen,
I am also from Massachusettes. I live in Mansfield with my husband and 3 children (triplets). They are 6 years old. One of my sons was diagnosed a year ago at age 5 with DMD. My other son has down syndrome and autism. My daughter is a typically developing young girl. Obviously you have a lot more experience than I do with DMD and the additional challenges of raising another child with special needs. Are there any specific doctors (for DMD) that your son sees in Mass. that you would recomend? I hear alot of raving about the docs in Ohio and some other states by others on the message board but I never hear about any in Mass. Just curious what your experience has been, if you don't mind sharing. I hope your son and daughter are both doing well.
Take care,
cindy q
 
 
 

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