Resolution

A new year. A new approach to DMD, at least as it affects our family.

My essays on this site over the last three years often refer to Duchenne Muscular Dystropy as the “dream killer”. Initially, the shock of the diagnosis, historically disappointing lab results, and the motives and methods of Big Pharma juxtaposed against the dreary decline of youngsters with Duchenne made me edgy. Therefore, I would slap DMD by calling it a “dream killer”. Very dark.

Constant concern for the child’s health and safety, limited youth sports participation, classmates’ misunderstanding, worry about educational and career pathways, the hope for a family in the future … being new to the challenge, I could only jump to conclusions that, frankly, were not complimentary about my grandson’s future.

Well, we certainly have learned a lot about making lemonade from lemons. It helps that Hayes has such a loving family. And, we all like adventure. Furthermore, Hayes is a very bright youngster.

Some kids will excel in a sport. Hayes more than excels in learning. Labs seemingly are starting to step up their game with improved genetic re-engineering research. We have compacted years of travel and fun into the last three years or so and plan to continue packing as much fun and adventure into Hayes’ life as our family standard. His medical team at Cincinnati Children’s Hospital is top notch.

Life mortality is increasing. Young men with DMD are going to college, getting married, and having children. Light is piercing the darkness of DMD.

Because of Hayes’ easy understanding of scientific principles and interest in all things science, I would not be surprised if he ultimately becomes a member of a research team that finds a cure to Duchenne.

I am changing my perspective about DMD. I resolve to no longer refer to DMD as a “dream killer” but rather as an opportunity for youngsters, their families and caretakers to elevate their game of life to heights that may have been taken for granted if DMD was not part of their lives.

DMD – an impediment to be overcome by faith and big hearts, the miracle of modern medicine, excellence in all things lived, and avoiding unhelpful feelings. To the contrary, we DMD families have infinite reasons to find blessings associated with our collective fight to end Duchenne.

That is my New Year’s resolution.

Kindly yours,

Papa in Franklin