I was like a lot of people who were aware of Duchenne Muscular Dystrophy but never really thought much about it until about three years ago when my son, Mason, was diagnosed with the disease.
Duchenne is a genetic disorder characterized by the progressive loss of muscle. It is a multi-systemic condition, affecting many parts of the body, which results in deterioration of the skeletal, heart, and lung muscles. Duchenne is caused by a change in the dystrophin gene. Without dystrophin, muscles are not able to function or repair themselves properly.
Because the dystrophin gene is found on the X-chromosome, it primarily affects males, while females are typically carriers.
We found out my wife is a carrier, which is why Mason was diagnosed with Duchenne Muscular Dystrophy and why my youngest son, Dawson, was also diagnosed with Duchenne Muscular Dystrophy.
Knowing that both of our sons have what is essentially a death sentence was and is devastating.
Every case is different. The average life expectancy for Duchenne Muscular Dystrophy is 20 to 30 years. Our kids are very young, so we remain hopeful that with the right research and medical advancements, they will beat the odds.
Gene therapy seems to be helping to mitigate the effects of the disease in our children, but it is far from a cure. More research is needed and to make that happen, we need to create more awareness about the disease in the public.
To that end, I joined other parents like me in conjunction with Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne Muscular Dystrophy, for an advocacy day in Springfield. Parent Project Muscular Dystrophy has initiated a pilot project to focus on state-specific advocacy efforts and Illinois has been selected as the inaugural state for this initiative.
The Advocacy Day in Illinois focused on highlighting key legislative measures, including:
• House Resolution 636, which designates Sept. 7, 2024, as Duchenne Muscular Dystrophy Awareness Day in Illinois.
• Senate Bill 3277, which seeks to implement newborn screening for Duchenne in Illinois.
• SB 3277, which aims to develop mandatory protocols and best practices for providing medical guidance for Duchenne.
I urge lawmakers to enact these common-sense bills and help Illinois become a leader in the fight for a cure for Duchenne Muscular Dystrophy. It is not easy to tell our story, but it is an important one to tell. My family is not the first one to deal with this terrible disease and we certainly won’t be the last.
We love our children and we are committed to doing everything we can to ensure other families do not have to go through this. We are trying to change history and with the help of the Illinois Legislature we can and will get closer to the cure families like mine are fighting for every single day.
Daniel Flessner lives in Roberts with his wife, Lindsey, and their sons, Mason and Dawson.