My son Ryan was born in 1990 and has DMD. I have a healthy daughter and a loving wife. I recently started a business doing home improvements and property maintenance for seniors and those with mobility issues.
Name(s) of child(ren)/individual(s) with Duchenne:
I am sorry to tell you that Ryan passed away on January 3rd after a pneumonia that went completely out of control. His lungs were just too tired, stiff, and damaged.
If you get an opportunity, he has a wonderful tribute to him on Facebook. The link is at http://www.facebook.com/home.php?#/group.php?gid=212488384363&ref=ts.
Please don't feel badly about your message to me. You had no idea.
We had a lovely celebration yesterday attended by close to 700 family and friends.
We can talk more about this. I just wanted to let you know.
Peace and love,
Owen, I liked what you said that you go like hell when Ryan is feeling well. Wehave to do that especially as they get older. I am so glad your son is going to College. Erich really did like gettng out and going and meeting new people. He was more on theshy side but once he knew someone,he let go!! Has Ryan reminaed on the trach and tube? It is like when that part comes in our sons lifes, those just become a part of who they are,a nd we learn to deal and live with them as they do. I do think it helps them remain stronger though as they d not use up their strength trying ot breathe or eat. I know erich flourished after he had the trach. It is horribly devastating to lose a child ... I pray that you have many more eyars with Ryan. I hope youare well.
It is so hard at times to look at picturesof these young men as it so much reminds me of Erich. Just one more day with him...
Your son is on a ventilator? How is he doing on it? You say he is struggling...in what ways? Does he go to school? Can you tellme a little about him, that would be nice, thanks. thank youfor adding me as a friend.