Started this discussion. Last reply by ANTONINO ENEIDE Apr 13, 2017. 7 Replies 0 Favorites
Hello everyone. I am new to this site and hoping for some insight from fellow parents with children who have large in frame deletions. My son was officially diagnosed last week with dmd/bmd deletion…Continue
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When Karsten was your sons age he fell, a lot. He seemed to trip over nothing and would always hit his head because his little arms couldn't support him when he fell. He is stronger now and stopped the frequent falling around age 4.
He had enlarged calves, still does, but they look more proportional now that he is taller. I remember strangers commenting on how he would be a great athlete one day. It was hard for me to hold my tongue and say no he won't.
I'm glad that you know it is an intermediate diagnosis, I lived years thinking it was Duchenne. His diagnosis was only changed a few years ago when it was obvious he was not declining at the rate of Duchenne.
I hope you and your family are recovering from the initial diagnosis. I remember how hard it was.
You are welcome to contact me by email: jaime_chesnut @yahoo.com
Sorry to hear about your son
My son is 6 1/2 and has also a very large inframe deletion 3-48
And from my friend Simone the deletion from her 5 1/2 years old son is large and inframe too 3-30
When you has questions you can ask us
Best wishes
Nadja