I just found out my child has Duchenne MD. I am hurt beyond words. I can't stop crying because I know what is to come. I joined this group so I can talk with other people who are going through the same thing.
About my family:
I have 4 children 2 girls, & 2 boys. One who is 4.5 was just diagnosed. My other son does not have the DMD.
Name(s) of child(ren)/individual(s) with Duchenne:
Jessica Stevens
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Thorhild
State:
Alberta
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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 my-science@ukr.net. If you have a free time write me on my email I wiil wait.
Please don't hesitate to contact us by phone, email, or message if you have any questions regarding care, research, genetic testing results, etc. We can connect you with the appropriate staff member who can help -- 800-714-5437 -- community@parentprojectmd.org
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Hello, Jessika! I wrote to you the letter to your email.
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 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 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. I would like to communicate with the American parents and doctors who probably know more about new medicines or methods for treating this condition. My email my-science@ukr.net. If you have a free time write me on my email I wiil wait.
StaffPPMD said…
Welcome Jessica...we're glad you found PPMD. Have you explored the "New Diagnosis" section of our website? That is a good starting point for information: http://www.parentprojectmd.org/site/PageServer?pagename=Understand_diagnosis
Please don't hesitate to contact us by phone, email, or message if you have any questions regarding care, research, genetic testing results, etc. We can connect you with the appropriate staff member who can help -- 800-714-5437 -- community@parentprojectmd.org