Thanks for your kind words ,in Israel do they hv any treatment for our kids please let me know,,,bcz my son is autistic too ,he has no sense for himself ,,,I am scared with this situation..Please help me .
I have 2 friends that live by me from Ukraine. I am in Alberta, Canada. Her parents are going back home at the end of the month. Please email me firstname.lastname@example.org anytime. I will ask the girls where they are from. They go home once every 4 years.
I am so glad you wrote. This is a very good community, you will find a lot of support here. My son is now 31 years so and is doing ok. Have you ever research France for their research? I have heard they are doing some amazing things I have heard. I'm so sad to hear you have to travel so far to get any help. We are lucky in the US to have so many resources so close by. One of son's nurses is from the Ukraine and has been with us for several years now.. We love her very much. My son is not on any special medicines at this time. He is on a ventilator to help him breath. My personal email is email@example.com. Best wishes for you and your family. Please email at any time and I will write you back. Much love, Carol .
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,