Before we talk about RJ, we want to thank everyone who has been so supportive of our family over the past four years with prayers for RJ, kind words of encouragement and charitable donations at one of our various events. We are happy to share that Rally4RJ has raised over $100,000 in the past four years to help advance research toward a cure for Duchenne Muscular Dystrophy. Your generosity is truly making a difference and finally the Duchenne community has real hope for a better tomorrow with all the promising research currently taking place!
We are cautiously optimistic, but it is a promising time right now. Research is finally moving forward with several human trials taking place in the United States (actually right in our backyard at Nationwide Children’s Hospital in Columbus, Ohio under the direction of Dr. Jerry Mendell) and genuine hope for a treatment could be on the horizon. The Duchenne community is waiting and wondering if/when it could happen.
RJ continues to be very strong. Still stronger than the average and the doctors are not sure if it is from the daily steroids he takes or because he is producing just enough dystrophin to keep him walking for now. Unfortunately, he isn’t nearly as strong as his friends and that is becoming more and more apparent the older he becomes. He has just about given up his favorite sport (football) at recess. It is heartbreaking. He says he can’t keep up and the kids tell him he doesn’t play well (the truth I'm sure), he is only at a preschool level physically and that is ok but not when your friends are starting to get really good. It makes us sad, but not RJ. He roams around with the girls or any boys he convinces not to play football during recess. Honestly, he rarely ever gets down. He is always in search of someone to have fun with, talk with and laugh. This is a lesson for us all on how to live each day being thankful and positive.
We learn so much from RJ and his journey each and everyday. Life has forced us to stop, listen, and enjoy. Our family has become stronger because of this.