Today was the funeral of my friend Sam Morgan from a small village in Wales, United Kingdom. He was 22 and had been ill and in pain some time whilst struggling with DMD. We used to communicate to and fro using the Action Duchenne website. He would ask me all sorts of questions about DMD, and I willingly told him what I knew. He was so hungry for knowledge and worried about his breathing. DMD is so heartbreaking in this respect. He always encouraged me and thanked me in my endeavors campaigning for change here in Wales. With his posthumous help I'm now publishing my book, thank YOU Sam and his family. Love you all xxxxxx

Rest in peace you kind and generous soul.

Ian

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God Bless Ian.x
Ian: I'm so sorry for the loss of your friend. God bless you for making changes.
Thank you very much Lisa and Terry Hugsss
I am so sorry Ian, you should post this to the action Duchenne website as Sam used to post a lot. Do you mind me asking what happened was it a chest infection?

Thinking of you
Mom to Thomas aged 19 with DMD
Already on there hun, that was my first port of call. It was a combination of things, he went ultra thin to 42 pounds, got back to roughly to 70 pounds, he had lots of difficulties breathing, 2 weeks before he passed he was in lung pain, developed a viral infection week before and palpitations (don't think he had cardiac monitoring all his life which is alarming). He'd be battling many problems for 18 months then he died.

Susan Barber said:
I am so sorry Ian, you should post this to the action Duchenne website as Sam used to post a lot. Do you mind me asking what happened was it a chest infection?

Thinking of you
Mom to Thomas aged 19 with DMD
sorry i missed the entry on Action Duchenne, you are right that is absolutely appalling, how can somebody with Duchenne not have 6 monthly cardiac assessments - total disgrace but i'm not surprised we had to fight and requested a new Cardiologist for Thomas who is now on Beta Blockers

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