i`m` a person responsable,lovely with her children,carefull,and i wish to have more force to go on.sometimes it`s very hard
About my family:
My name is Alina,i`m from Romania,i have two boys with distrofy Duchenne,we are a beautiful family,but we suffer very much for this children ,it`s very hard to explain how we feel and how much hurts this situation.i wanted to share with other people ,other parents,to find the power fighting for my boys
Name(s) of child(ren)/individual(s) with Duchenne:
Ok, it's been a few years since I've been on. A lot has happened. Gavin now 8 has gone from a wheelchair to a scooter. I am struggling emotionally. I don't feel I am strong enough to handle the progression of this disease. As well as knowing that my 4 year old will follow suit. I want to be strong for them, but other than being their mom and advocating for them, there's nothing else for me to do. I can't fix them. I am a fixer. I've become a control nut. I think my daughter hates me because I ask too much if her. She is 12 years old. I feel like a failure. I need someone to talk to.
Very sorry to hear abt your children .My son will be 6 yr old in coming may .He was diagonised with DMD when he was 18 mts old .When did you know about your kids being DMD ?As far as I know deletions 52 to 54 require exon skipping 55 , which is last in the priority list of Prosensa - GSK , so ground reality is it will take quite sometime before any disease modifying drug is available for our kids .My email is firstname.lastname@example.org for further chats
I know this is a nightmare. A total nightmare. There has to be an answer. So many wonderful doctors and scientists are trying to find solutions for our boys. We must try and enjoy each moment with our precious boys and just maintain our hopes and dreams for them. I wish I was nearer so I could help you. Take great care. Paula (Ireland). xx