Hello,

We have a son with Duchenne, he is 6 years old and his name is Braedan. We found out 2 years ago, so we are still very new to this world of duchenne like many of you.  It has totally turned our lives around, as I know I share this same feeling as many others out there.  The one thing that really comforted me when we had received this diagnosis, was the feeling that we are not alone out there.  I was contacted by a wonderful mom in North Royalton Ohio, and we have been very good friends since. She really has helped me and my family through this with advice, support and just hearing me out at times.  That is one of the main reasons that we want to start this support group for our area.  It really helps to talk to other parents, and kids that are in this journey as well. 

So we are organizing a support group in our area for families that are facing Duchenne. Our meetings would probably be quarterly, and will offer support to not only parents, the boys, but also their siblings as well.  Our goal is to have speakers touching on subjects as well as needed.

We live in Curtice, Ohio but would be having the meetings in the Toledo-Perysburg Ohio are. If anyone is interested in attending these meetings, please contact me at 419-260-2687, or by e-mail at thenegar2000@hotmail.com.

 

Thank you and hope to see you soon.

 

Sincerely,

Tammy Henegar

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I'm sure your already hooked up with clinic so ask about camo. I know it's scary sending your baby away for a week but I've been a MDA camp nurse for 13 yrs, the friends your son will make will be so important. It will also give you the chance to meet all of the parents in your area! Braedan is old enough to go this year and although, the mom's have a hard time at this age the kids do GREAT! I used to care for over 70 affected campers up to age 21, now we age out at 17 so camp years go by fast so don't wast time ok. He will have a blast I promise! Any questions call me 440-256-1867 jdrazetic@yahoo.com
Johnna

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