danielle i am very sorry about your brother , i love your pictures of frankie, thank you very much for starting this site, my best friend in the untied state son has dmd i to have phycall changeless but that is not going to stop me from finding a cure to dmd. kimmy
HelloDanielle, I haveDMDandhis brother20 yearsandIreally likedwhat I saw, especiallyin the photos.After allhe seemedso happyas I am,because theimportant thingis nothow it ends,but the waywe conceived beforehe arrives.I would love tokeep in touchwith you.After a long timerunning away fromthat I do notwant to hear, now I feelready to facewhatever comesahead.Couldyou hand meyour e-mail? Thank youfor your attention.
Hi Danielle, It's Alex's brother Ethan who is into wrestling, although Alex is a bit of a star spotter and has met alot of famous people.His favourite was Peter Mayhew(Chewbacca from Star Wars) and his most recent was Cherie Blair at our local hospice. Looked at your pictures of Frankie and it looks like you had so much fun , memories that you will keep forever. Lorraine x
I'm not up to much over Easter, I never really go anywhere, I like staying in my house. I've seen my niece and nephew, their cool kids, I bought them some chocolates!! Got my own stash too hehe. What are you up too over Easter?
I found you when I was looking for information about hospital beds and mattresses as my son is having a lot of difficulty sleeping. I have already requested information from the mattress company as you said Frankie did quite well with the mattress he used.
I am so sorry that Frankie passed away. I loved looking at all your pictures and it appears that he was able to enjoy a wonderful life. How wonderful of you and your sister to take such good care of Frankie. It brings tears to my eyes. Thanks for continuing to be involved in the PPMD community to help others of us who need advice on helping our sons deal with this disease.
You are such an inspiration! What a great life you gave Frankie (I watched your video)!!! I hope I can give my son things to smile about. My brother had DMD and died when he was 17. I was a terrible sister, very selfish. OH how I would do things differently......
Just read your post in Our Stories and thought it was such a beautiful story!! Thanks for sharing and for being such a great "parent" to your little brother. I am truly sorry to learn that he has passed on and wish you so much love and support as you try to carry on without him.
Wow! AMAZING pics! I'm a 12 yr. old boy in MN. and my cousin has MD. I really like how you made sure Frankie had an enjoyable life in tough situations like his. I hope we can do that for my cousin. Thanks!
i'm writing this from my grandma's page
Thanks for the welcome, and what a brill idea to set up the group. I am sorry for your loss of Frankie, you obviously all loved each other very much, and it shines through in your photo's. Best wishes for the new year.
First of all, I want to say, i'm so sorry for your loss. It's so evident that Frankie enjoyed his life to it's fullest. His beautiful smile and laughing face tells the story so well. It looks like you did a wonderful job of making memories. Thanks for sharing a little of your brother with us.