I'm 27, and live in the U.K. Myself and my sister were the main carers for my brother, Frankie. My mum was ill, and so we were his parents.
Frankie passed away a few months ago (aged 19) and we're all so sad and miss him so much. To be honest, I still feel like an active parent, not a bereaved parent. I thought I'd join to talk to other parents, but to also offer tips on how we dealt with things, on great pieces of equipment, or the hard decisions along the way etc.
I work for a charity (Fair Trade Wales) and I have a psychology degree. I care about people and the environment. I've been a carer all my life, and anything else is just part-time, caring for Frankie is always first!
About my family:
Frankie, frankie, frankie!
I also live with my partner, Adam, who is amazing!
And I'm close with my sister as we parented Frankie all our lives.
Name(s) of child(ren)/individual(s) with Duchenne:
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......