My son was diagnosed with duchenne at the age of 1.5 years. He has very large deletion(2-44). He is currently 7 years of age and on power chair, he stopped walking at the age of 51/2 years. He is not able to use his upper body as well, meaning he cannot lift his hands at all.
Anyone else with such large deletion and having similar issues with upper body?
I wanted to know if there is anything…
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