My name is Margarita, I live in Ukraine, Kirovograd. I have a son, who is ill with Duchenne. My name is Margarita, I live in Ukraine, Kirovograd. I have a son, who is ill with Duchenne. He is now 10 years old. Doctors diagnosed the illness at the age of 6.5. In Ukraine, no onetreats such children. Therefore, we are forced to travel to Israel each year toseea neurologist. There we learned howto swim in the pool, ride a horse,dospecial exercises (such asstretching)every day. For 2 years we have been able to stop the disease. But last 2 years my son fells woster than it was early. Iwould liketo communicate withtheAmerican parents and doctors whoprobablyknow more about new medicinesor methods for treating this condition. My email email@example.com. If you have a free time write me on my email I wiil wait.
hi carol - just ran across ur page & wanted to say HI - I was brought to tears when I read that you never thought you'd see the day your son turned 22. Our Levi just turned 3 and was recently dx w/ DMD - all we want is for him to turn 22, 32, 42, 52 etc. we have great family helping us and PPMD has been amazing. Your son looks so happy. and thaty's all we want for Levi and his 2 older bros who do NOT have DMD. well just want to say HI perlita
Carol, I would love to meet you--Wednesday would work. This sense of insanity is overwhelming, every step of the way has been frustrating. When Cory started kindergarten there were some problems at school which after trial and error turned out to be Aspergers. Good news, he was set up with an IEP and his school has been really great. He was also toe-walking at 6 so we went to his ped. who sent us to a ped. orth. surgeon. Dx was idiopathic and they casted him. That didn't do much so he suggested surgery, I said no (surgery when dx is idiopathic?). November '08, a teacher's off-the-cuff comment "he walks like one of my MD students" sent me through this latest labyrinth trying to get a dx. One dr. told me to go to a child psych. Finally found MDA through the internet and got a dx in Jan and genetics lab in March. But that is about all they can offer. Many hours of research and I have found very interesting work on the connection btwn autism spectrum and DMD. I just really need to find the best place to take Cory for real help.
Hi Carol. I just joined PPMD and was looking for parents of children with DMD in Montana. I live in Missoula and my son Cory is 8 yrs. I thought I should introduce myself here because Paula H. mentioned your name to me. Just wanted to say hello.
Hey Carol, my 11 year old son also has DMD, that is so awesome your son is now 22. I try to not think about the future of when this disease will take him from us and I often get pretty depressed, with every Birthday I wonder how many more he will have, so it's sooo good to see you and your son at 22. Gives me hope :)
My son had drop foot really bad, he had the heel cord surgery done, was scary and a HARD time believe me, but now that he is all healed from it, we are so happy we had it done, he's much more comfortable in his shoes and appearance. He can wear just regular velcro shoes now.
My 10 year old son has DMD and I get really down sometimes but seeing that your son is now 22, that just lifts my spirits! That is so amazing to me. I would love to get to know you and maybe hear more about your son. I am always open to advice and hope to talk to you real soon.