October 17th, the second time in my life that I heard the most agonizing words...my grandson Riley has Duchenne. Riley's older brother Aydon was my first born grandchild and passed away at 6 weeks of age from heart defects. When Riley was born, I thought will God take him too. It was hard to let myself love him completely, I was scared, but Riley broke that wall of fear right down and took my heart in his hands.

Knowing that Riley has Duchenne's is very difficult for all of us. Riley is vibrant and full of life, he is taking this well. He talks about milligrams and his food intake. He is so adorable. I didn't know that much about Duchenne as many of you probably did not, but since the diagnosis, I have jumped in and tried to learn all that I can. It's truly amazing how much of your life changes and all you can think of is Duchenne....will there be a cure for our boys, for my boy?

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Comment by Dreama Whitlock on March 22, 2012 at 1:55pm
Thomas could you please take a moment to sign the petition for funding for research into duchenne. We need 25,000 signatures by April 17, 2012. I plan to hit the streets for signatures also, Danielle from PPMD is sending me balloons, flyers, and wristbands to hand out while collecting signatures. I am so excited to do my part to help fight the cure. here is the link: https://wwws.whitehouse.gov/petitions#!/petition/research-health-funding-duchenne-muscular-dystrophy-families/9ncLgCmp
Comment by Thomas Hoel on March 21, 2012 at 12:28am
Dear Dreama, I am so sorry to hear about your grandson Riley being diagnosed with DMD, and for the loss of your grandson Aydon. I can already tell from reading your post how blessed Riley is to have a grandmother like you to love and advocate for him. I am happy you found your way to PPMD. When my son was diagnosed in 1992, we were told to take him home and enjoy him while we had him. My wife and I refused to accept there was no hope for our son. There is hope, and we lived it first hand for 20 years. Finding PPMD gave us the tools to manage our son's care and get directly involved in fund raising and advocacy for treatments and a cure for DMD. When I look at how much the day to day management of DMD has grown and improved, and the clinical trials in the pipeline where none were in place, just theories, I pray there will be treatments or a cure to benefit Riley. God bless you all.

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