← Return to Grandson: Myotonic Dystrophy, Severe Autism, Tuberous Sclerosis

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@dgray1110

My 15 yr old grandson has had severe myotonic muscular dystrophy since birth. Nov. 6th he stopped chewing, stopped swallowing, stopped drinking, stopped walking and stopped sleeping. We have been to 2 hospitals in the Northwest and only get "there is nothing we can do for him". Has anyone seen this rapid of digression before? What can I expect? We are going home today and I have no answers……please ….if you have any experience or knowledge of this chonic illness ….please help me….

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Replies to "My 15 yr old grandson has had severe myotonic muscular dystrophy since birth. Nov. 6th he..."

Hi, Sorry to hear about that. My sister in law and her brother both had that. From what my brother said, it is an inherited disease. Both their parents did not have any symptoms and yet the kids got it. Her dad passed at age 90 and her mother died of cancer at age 50. Her brother died in an accident at age 40 and was active until the end. My sister in law was a small woman, with very little muscle tone and it didn't get bad until she was about 56 and she passed last year at age 59. She had one son, my nephew, who is now 30 and about 6'4'' and about 275# and a big strong muscular guy. My brother took CNA training to take care of her until the end and felt helpless to see her like that knowing that he could only make her feel comfortable. Let me talk to him and see what other medical information he has. He lives in Rhinelander, WI so northern WI.

Any information would be greatly appreciated

Hi @dgray1110, I merged the 2 discussions about your grandson and myotonic muscular dystrophy together and have associated the discussion with 3 groups: About Kids & Teens, Bones, Joints & Muscles, and Just Want to Talk. This will help bring others into the discussion.

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