Hello! My name is Margarita, I live in Ukraine, Kirovograd
About my family:
. I have a son, who is ill with Duchenne. He is now 9 years old. Doctors diagnosed the illness at the age of 6.5 . In Ukraine, no one treats such children. Therefore, we are forced to travel to Israel each year to see a neurologist. There we learned how to swim in the pool, ride a horse, do special exercises (such as stretching) every day. For 2 years we have been able to stop the disease. But I would like to communicate with the American parents and doctors who probably know more about new medicines or methods for treating this condition.
I want to participate in different Parents’ Projects for Muscular Dystrophy online. There may already be drugs that can cure my son. Please help us, because we are lonely here with our problem.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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Dear Margarita: Thanks so much for writing about your son Yashchenko. It sounds like you are doing the right thing by going to Israel for medical care, although that must be awfully burdensome. Is your son on steroids? While that is a medical decision the trust must be made by your physician it is considered to be the standard of care. I wish I could say that American Doctors had a cure, but we don't. We (and the EU too) are testing many therapeutics but nothing has been approved so far. The PPMD website lists of all the compounds the are being tested on our website and try to keep it as up to date as possible, so that is a good resource for you. You should join and you can keep updated on anything new. TREAT-NMD http://www.treat-nmd.eu is also a great resource, more EU focused and may have some support that is closer for you. Our annual Connect Conference, http://community.parentprojectmd.org/events/2016-annual-connect-conference is the largest family and patient conference and will be streamed online. Watch the website for more details. Also, there are many very active Facebook groups that focus on DMD and could be a good resource for you. Many families ask questions and much good information is exchanged. Please let me know if you have any other specific questions and please stay in touch! - Best,