Reflecting on Halloween

Halloween was last night. What a blast with my grandson. Hayes dressed up as a mad scientist in garb custom-made by his very talented mother (yes, I am prejudiced).

Hayes’ lab coat contained a variety of patches, all denoting some risky or fearful aspect of science and chemistry. But, it was the blinking goggles that stole the show in the neighborhood, along with his playful attitude.

I could not seem to get my mind off grandson Hayes’ Duchenne as he bounced door-to-door treating residents and collecting candies. I wondered how many future Halloween’s he will be capable of thoroughly enjoying along with the rituals and activities of the spirited observation.

Hayes is participating in a clinical trial involving a hopeful treatment that may make him more comfortable over the years if it pans out. As with any trial, there are risks but those risks are easily outweighed by any foreseeable modest side effect or, worse, inaction. We are hoping the scientific method and medical/pharmaceutical science behind this trial and other currently promising trials are not the stuff that “mad scientist” lore stems from in literature and the movies unless, of course, the mad scientist ends up with the right result.

We sure did see a lot of animated pumpkins or, should I say, jack-o’-lanterns. Some actually spoke and sang. The impossibility of reality of such special effects just makes those effects more fun to enjoy.

There is no cure, yet, to Duchenne. Truly scary. Is a cure impossible? Of course, not!  

Read about the years leading up to a cure for polio or, as we have learned in the last several days, a worthwhile treatment for cystic fibrosis. Those affected families and medical providers experienced despair just like we Duchenne stakeholders do today ... until that special Ah-Hah moment when cures or worthwhile treatments have been discovered.

As I continue to pray for a cure of Duchenne, I will think back to those delightful costumes of hope which I enjoyed so much during last Halloween evening. Whether Cinderella, a North American frontier explorer, a baseball player, or, yes, a mad scientist, hope for a bright future for those youngsters’ lives is alive and well.

May it also be so for an end to Duchenne, sooner rather than later.  

Kindly,

Papa in Tennessee