Time Is Muscle

Just saw a television commercial on heart attack prevention. The emphasis was on taking quick action as soon as cardiac trouble is detected. The tagline at the end was “Time is Muscle”. True, the heart is a magnificent but vulnerable muscle.

Duchenne Muscular Dystrophy creates a lethal vulnerability for 1 out of every 3,500 babies (mostly boys) born in the world each year. Over 40,000 American young people and more than 200,000 across the globe suffer from Duchenne.

Duchenne is a rare genetic disease that manifests as dramatic body muscle deterioration and damage for young boys (and a few girls) since the X chromosome is implicated. During early cellular development in the womb, a muscle building protein called “dystrophen” fails to reach its critical destination in the chromosome; thus, muscle fiber building and protection is not achieved. This is a very complicated genetic mutation.

It is necessarily a death sentence, at least up to now. The deterioration over 15-20 years is a torture sentence. This monster is absolutely horrible and causes not only damage to muscles but also irreparable injury to the happiness, security and future of Duchenne families. It is an evil far too powerful.

Thank goodness, advances in cardiac and respiratory care are increasing life expectancy of afflicted young people. Who knows, Duchenne children such as my lovable grandson Hayes may grow to early middle years in which event he may have the opportunity (which we sometimes take for granted) to attain an education, become employed, get married, and raise children, at least for awhile.

Make no mistake, time is critical. Duchenne children steadfastly grow weaker. Each weekend, I look at my beloved grandson only to experience remorse that he is weaker this weekend than last weekend, and so it will be going forward. The monster inexhorbantly progresses without mercy.

It’s past time to turn the tables. Let’s do our homework and figure out a way to help to end Duchenne.

We must be very intentional to end Duchenne as soon as we can. Time is muscle.

Kindly yours,

Papa in Tennessee