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DS diagnosed with Duchenne

4 replies

sunshinedaises · 27/01/2026 12:58

My 5 year old DS has just been diagnosed with this condition, and I just wondered if anyone else has a DS affected by Duchenne. I feel absolutely heart broken

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LadyMacbethssweetArabianhand · 27/01/2026 13:11

I am so sorry to hear this. I had a neighbour when I was a child with Duchenne and I taught a boy with it too. Have you been given support or details of any groups etc?
Both boys i knew attended school. If your son is at school, then get in touch to find out how they will support him. Thinking of you

sunshinedaises · 27/01/2026 13:20

@LadyMacbethssweetArabianhand thank you for your response. I haven't been given any support info yet but hoping that will come soon as we've only just found out. I have joined a few fb groups and everyone has been lovely I've spoken too. I have been told someone will be out from the hospital to see and speak to the school but not sure how soon these things happen

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LadyMacbethssweetArabianhand · 27/01/2026 13:25

sunshinedaises · 27/01/2026 13:20

@LadyMacbethssweetArabianhand thank you for your response. I haven't been given any support info yet but hoping that will come soon as we've only just found out. I have joined a few fb groups and everyone has been lovely I've spoken too. I have been told someone will be out from the hospital to see and speak to the school but not sure how soon these things happen

Please tell the school as soon as you feel able so that they can be sensitive to your son's needs.

ToBeFair · 27/01/2026 13:47

I am sorry to hear your news, sunshinedaisies. Muscular Dystrophy UK is the umbrella charity in the UK for neuromuscular conditions like Duchenne's, and has a 'newly diagnosed' service via its helpline, here: https://www.musculardystrophyuk.org/support/information/just-diagnosed/ I would hope that they will be able to help you understand more about the condition and how it might affect your son, and connect you to support groups in your area etc.

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