Comment

Comment by Beth Baird on April 22, 2013 at 4:31pm

New (well kind of) here. I have been a volunteer at MDA camp since 1980. I just finished the adoption process in China for my son. He is 6 and has Duchenne. Waiting on the deletion/duplication test results.

Staff Comment by Stephanie Matthes on September 25, 2012 at 9:48am

Hi Georgia families! LaGrange College would love to have a Duchenne family attend a practice as well as their game on 9/29/12 in honor of Coach to Cure MD. If you're interested or know another family that would like to attend, please shoot me a message or email! stephanie@ParentProjectMD.org

Comment by Allison & Whalen Kuller on August 15, 2010 at 8:06pm

Could anyone use Deflazacort? We have 24 unopened 30mg tablets that I am happy to mail to the first person to email or message me. Email address is wakuller@comcast.net

Allison

Comment by Debbie Eggleston on September 3, 2009 at 12:30pm

Our son Kyle is 4 and was diagnosed in May 2009. Nothing can ever prepare you for something like this. My goal is for us to live for today and enjoy every minute of it!

Comment by Jim & Melissa Smith on September 7, 2008 at 10:33pm

As of Thursday we have Brandons final diagnosis, DMD, with a deletion of exon 33. I guess you all know this by now, but no matter how ready you THINK you are to hear that, you are NOT

Comment by Deirdre Stinchcomb on August 12, 2008 at 4:15pm

To the Owens, good luck in Cincinnati. With disease, hope is all that keeps me going at times.
To the Smiths, my son was diagnosed at age 3 in 2001. It was the worst news ever but with support, you can make it. It is a hurt that only the few of us who are affected can understand. Keep the faith, it will get you through.

Comment by Donnie and Linda Owens-Jacob Owens on August 11, 2008 at 8:39pm

We live in Midland (C0lumbus) Georgia. Jacob is 7 years old and was diagnosed November 2006. He was enrolled in the study July 7th. We leave in the morning to go to Cincinnati to have a muscle biopsy done then the following week to begin the PTC 124 ( or placebo). We are excited and concerned but mostly hopeful.
Linda

Comment by Jim & Melissa Smith on August 11, 2008 at 6:23pm

The necessity for such a group is sad,but I am glad to have found it. Our son Brandon is 8 and being diagnosed now. Neurologist is pretty positive he has DMD, and after much reading, cant imagine it"s anything else, . We live in Blairsville