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?