It was 1 week before Christmas in 2008 that both my boys, ages 5 & 2 were diagnosed with a 100% fatal disease by early to mid 20’s! The disease is Duchenne Muscular Dystrophy(DMD). DMD is crippling by early teens, completely paralyzing by late teens and 100% fatal by early to mid 20’s. Both my boys lost the ability to walk by age 8 and now my oldest son, Jonah, is 13 and can’t use his arms or legs. Our youngest son is 10 and watches what DMD will do to his body and is slowly losing his muscles in his arms. DMD never affects their brains so they watch their body deteriorate every day of their lives.
We were told by our first Neurologist after both boys were diagnosed be thankful they weren’t born in the 80’s because we use to tell parents go home and love your child they are going to die by mid teens. In the 7 years since they were diagnosed we have started a foundation to help boys like ours to fight everyday and we’ve raised $1 million dollars to research this horrible disease. Our foundation is called FightDMD and as long as there is breath in my body I will fight for these boys that can’t fight for themselves. We have a video on our website at www.fightdmd.com and our motto is “We keep living, keep loving and keep fighting”!
Thank you for your podcast, and thank you mostly for your service to our country!