DS diagnosed with Duchenne

[sunshinedaises]

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

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

@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.

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.

I'm not sure if you're still checking this thread but I wanted to say I knew and loved a lot of incredible young men with Duchenne. One wrote and published a book, one was a photographer, another created his own charity and one was best known for being hugely talented at oral sex! I hope you and your son receive all the support you need so that he can live his very best life.

That last bit, what? Are you serious?

Yes I wasn't meaning to upset anyone, sorry. He had relationships with me and a few mutual friends and was a true lady's man! He was also the kindest and funniest person I've ever met. I miss him everyday.
I know OP's son is still little and that there'll be a lot of difficult days ahead, but there was also so much happiness, laughter and good times in my experience, and it's important to know that when first facing down a new diagnosis.

Im sorry, I was too quick to take offence. Just felt a bit off on this thread.

Your friend sounds amazing.

@greenfingers2026 thank you I appreciate that. Hearing stories like this make me feel so much more positive for the future