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Here are some suggested organisations that offer expert advice on SN.

Muscular dystrophy

(2 Posts)
loopylou10 Thu 03-Dec-15 01:01:01

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.

BobbyV Sun 06-Dec-15 23:34:24

I didnt want to read & run as i can imagine what yr friend (and you) are going through.
12 mths ago my DS was suspectes for MD & had bloods/MRI tests etc. They were negative but for 2 weeks our life fell completely apart.
What helped was friends who just offered us a shoulder to cry on when needed. We obvs had to hold it together in front of DS so there were a couple of times when friends took DS out so we could curl up & cry which was needed.
There are many support groups out there who can help them cope/understand the future and if the time comes the hosp will put them in touch.
For now all you can do is offer support/positivity. I really do send them my best xx

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