Muscular Dystrophy(3 Posts)
My best friend of 33 years has just found out that her son may have Muscular Dystrophy. They haven't had an official diagnosis, but have been told that their sons levels for the muscular genetics testing came back very high, which is a strong indication for Duchenne muscular Dystrophy. They should have an official diagnosis withing 8 weeks. Her son is nearly three, he can walk but can't run, he is still quite 'toddly' when he walks and not as agile as some of the children of his age. He hasn't started speaking but has a very good understanding of general instructions like "go get your shoes" etc. To look at this boy he looks like a normal healthy boy, so understandably my friend and her husband are devastated at the prospect of watching their seemingly healthy son deteriorate before their eyes, and who may live no longer than 30. I would like to hear from anyone who has been in this situation and how you dealt with it. As friend I am struggling to find the words to make her feel better. All I can do is tell her I'm here and offer help. I've also tried to reassure her that as they haven't had a formal diagnosis then they should try and cling on to that little bit of hope that it turns out to be something else.
Devastating for them all. You can't make this better but you can be there for her. The charities can put her in touch with other families when she is ready. Xxx
What a good friend you are Having had something similar happen to my child (not the same condition though) I think that just showing that you are thinking and caring at this difficult time will help support them. Lots of people stop calling and back away as they don't know what to say or how to deal with it.
Have you tried the SN Children board? There may be posters there who can advise about the specific condition and support groups that are out there.
I hope that it turns out to be good news for this family - the waiting must be so stressful for them
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