Our Journey Deaing with Duchenne
Our son Joshua was born in 2007. Joshua, our oldest son, is an amazing and fun-loving boy. He was diagnosed with Duchenne Muscular Dystrophy in 2013. Duchenne is a progressive muscle degenerative disease that impacts 1 in every 3,500 boys. It starts by limiting their ability to play and run in the early stages, to losing the ability to walk by early teens, and then ultimately taking their life in their early 20s.
Our family has no previous history of Duchenne. As an infant and toddler, Joshua was no different than other young boys. It was not until he was 5 years old that we noticed that he had a hard time running and jumping. We had no idea that after taking him to a neurologist, we would be receiving the most devastating news we could have imagined. We were told that he would eventually lose his ability to walk and lose his life to this disease. We were heartbroken and felt helpless. We struggled to make sense of this devastating diagnosis, but with the help of our faith, family and friends, we set out on a new journey. A journey that we believe will ultimately help find a cure for this disease.
We have committed ourselves to do all we can to bring a cure for Joshua and all the boys with Duchenne. Joshua is now a 5th grader, and he loves to play on his iPad, swim, and build with Legos. He is a courageous, caring and adventurous boy. He is a big brother to his two younger siblings, Jacob and Jeremy.
As part of our journey, our family has partnered with CureDuchenne, a national non-profit that is leading the effort to accelerate the drug approval process on potential life-saving therapies. The organization funds research projects that help in creating potential therapies for Joshua and all boys with Duchenne. Our goal is to bring awareness and funding to support research and development of new therapies to treat Duchenne.
Joshua and all these boys are in a race against time, and we will do all we can to help them. We are hosting a Dealing for Duchenne – San Antonio event on October 21. Please join us in this fight to help save the lives of all those with Duchenne. Together, we can CureDuchenne.