I was born with muscuar dystrophy.Is there any closer of finding a cure for md?
They're getting closer and closer to finding a cure for many types of MD especially Duchenne. They know what they need to do but don't know how to deliver it. Do you get the Quest MDA magazine? You should be getting it free. It has an update for the research. Call your local MDA clinic and they will put you on the mailing list. You can also find the same magazine online at http://www.mdausa.org/publications/
Subject: [dmd] I was born with muscuar dystrophy.Is there any closer of...
Date: Sun, 3 Jun 2007 12:51:12 -0400
Do you know what type of mutation you have? If you know the type and the locaiton on the gene (exons)?
Hi! I am Wheelie’s mom.
We just picked Wheelie up at MDA Summer camp.
Wheelie is now 16, he was diagnosed at 5 years old.
We have not done any medication therapies.
Our doctors feel that once the medications are stopped that the drop in
muscle weakness is too severe.
We have never been to a conference for DMD.
Please let me know how it was.
Hi Wheelie’s Mom! Nice to meet you. How is your son doing? How are you?
The conference is great. I go every year but I always get something new. Although they mostly cover research and standards of care, it’s also a really great place to get the emotional support as well as practical advice from parents that either are at the same stage as you or have already passed it and have tips. Everyone there is really gresat. there are about 300 attendees. Who knew there were so many of us? And when you get there you find out that everyone has the same crazy life you do If you want to see more about it go to www.parentprojectmd.org
let me know if htere’s any info you are particularily interested in. I can always forward it.
Where do you guys live? We live in Phoenix now.
Hi! we are doing okay I think. I won’t be able to tell for a month or so how we are really doing financially. My husband lost his job at the end of May, but we have still received paychecks until last week.
Weelie just came back from MDA Summer camp and it seems that each year we notice just a little bit of strength gone. He says he thinks it is due to uncomfortable camp beds. I ask for a hospital bed every year but they are in short supply and my son says that the other boys are in worse shape than him and gives it up. Bless his heart.
We live in Illinois, a small town near Chicago.
How old is your son again? I replied to a couple people, I have a bad memory unless I save e-mail messages.
You can send messages directly to me at this address, I find it a little easier than going onto the chat room, I’m not too good with them.
Do you have other children? I have 3 other children, Wheelie is my youngest.
In our family we could hve all the classic cases that they use for the genetic example : 2 boys 1 effected - 1 not & 2 girls we haven’t had them tested, but there is a possibility that 1 is a carrier of the gene, and 1 not. I pray neither one is a carrier, then we will be done with carrying on the gene responsible for duchenne.
Please tell me about your family, is your son the only one with duchenne?
It seems to have started with our son in our family, there has been no one else with it.
It’s late, I need to get some sleep so I can start tommorrow well rested.
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