My son has Duchenne Muscular Dystrophy. Are there any other mothers out there that can share ideas on this neuromuscular disease?
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Iridescent - posted on 02/20/2011
Since this is over 2 years old, I'm going to lock the post. Please feel free to start a new thread.
I'm sorry your child (and your family) are going through this, and I hope you're able to find some joy out of this, as hard as it is.
Cindy - posted on 02/20/2011
My son has dmd and he is now 18 years old. As of right now we are going throw the worst time in our life, he's in the ICU with a breathing tube. He had fluid in his lungs, he was fighting for his breath and as a last resort he had the tube put in. We found out that he will not be coming home and wasn't given much longer. The one helpful word of advice is never take your child for granted. Spend each day as if it was the last, it will be alot of work but well worth it. If your given the chance for the operation that corrects the spine DONT do it. The doctor said we made the right decision because if he had the surgery he would have had the breathing problem and would have passed alot sooner. If anyone want to talk or needs information I have no problem sharing and helping the best I can from my experiences.
HI Holly. My little boy Sam (2) has congenital MD - we set up a charity to raise awareness and funds for research. www.pleasefixsam.com
I have a lot of contacts at Action Duchenne in the UK... Where do you live??
You can drop me a line any time - to talk, share, or whatever... firstname.lastname@example.org
Dawn - posted on 04/10/2009
Hello there, My son was also diagnosed with DMD about 3 yrs ago. Let me know what questions you have. I would be more than happy to answer them as well as discuss any concerns with you in regards to our sons. Its great (in a way) to find someone else who is going through the same things I am.
Bethany - posted on 03/29/2009
Hi eveyone. I have a teenaged son with DMD so we've been dealing with it for a while now.
Joanna - the best advice I was ever given was to talk to the school your son will be going to as early as possible. That pretty much means now. Most schools are very helpful and willing to work with you (my experience at schools in the US and Australia) your son has the right to attend a mainstream school (in my opinion the best option for social reasons) and there are plans and resources to make sure that things go smoothly.
I'm not all that private regarding what we all have to go through so if you have any questions that I might be able to help with please feel free to add me to your list and fire away!
I have a 4 yr old son wih DMD who was diagnosed just after he turned 3 yrs old. I feel like I am in unchartered territory ad haven't been able to recieve any guidence or advice on how to deal with issues - like going off to school and what, if any concerns do I need to be aware of. A lot of DMD parents are private and I find that difficult as I feel like I need to lean on someone who knows what it is I go through. I just can't seem tofind the supprt that we all need.
Marie - posted on 11/06/2008
I don't know about the Duchenne Muscular Dystrophy but my daughter has Myasthenia Gravis Muscular Dystrophy and it is so rare in children that it is so hard to find anyone to talk to about it. I understand trying to find someone to reach out to. We are traveling everywhere with her now due to so many medical crisis.
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