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Margarita Yashchenko
  • Female
  • Kirovograd
  • Ukraine
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  • Jay Griffin
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Jay Griffin left a comment for Margarita Yashchenko
"Jaygriffin@ctc.net"
Sep 16
Jay Griffin left a comment for Margarita Yashchenko
"Email me atjaygriffin@ctc.net"
Sep 16

Profile Information

About me:
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:
Yashchenko Daniil
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Kirovograd
State:
Ukraine

Comment Wall (6 comments)

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At 9:37pm on September 16, 2017, Jay Griffin said…
Jaygriffin@ctc.net
At 9:36pm on September 16, 2017, Jay Griffin said…
Email me atjaygriffin@ctc.net
At 10:00am on September 7, 2017, Jay Griffin said…
Are on Facebook messenger
At 10:00am on September 7, 2017, Jay Griffin said…
He is doing well
At 6:22am on January 22, 2017, Jay Griffin said…
Hi. Our son is 7 and he has Duchenne. We are in the United STATES. We can skype a little early here. How is he doing?
At 9:50am on March 30, 2016,
Staff
Abby Bronson
said…

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,

Abby

 
 
 

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