September is Duchenne Action Month

In years past, the month of September has always marked for me the beginning of football season and the end of long hot summer nights. Now, unfortunately, this September month has been consumed with helping raise awareness for a terrible disease that afflicts my adorable four year old grandson Hayes and similarly situated youngsters.

September 7th was Worldwide Duchenne Awareness Day. This month of September is Duchenne Action Month.

Duchenne is the most lethal form of the various strains of Muscular Dystrophy. A genetic train wreck for one out of every 3,500 boys (and a few girls) born in the world each year. Duchenne causes severe muscular deterioration that, over a few years’ time, progressively weakens the patient to physical limitations to braces to wheelchairs to breathing problems to heart failure. Not only is Duchenne a death sentence but also a torture sentence for young people who absolutely do not deserve such tragedy.

There is no cure on the horizon, yet. Treatments are limited basically to pain and swelling symptomology.

What can we invested onlookers do about such a monster? First, become more aware of the disease itself and the human and financial toll, pharmaceutical and biomedical efforts, and family support groups involved with Duchenne.  

Does increased awareness truly help? You bet it does! For example, Tennessee Governor Bill Lee issued an official proclamation decreeing September 7, 2019 as Duchenne Awareness Day for the Volunteer State. All it took for that public announcement to happen was simply for ordinary folks without political connections like me to educate the Governor’s Office on the horrible reality of Duchenne and the need for greater awareness in hopes that individuals and organizations may pick up or at least participate in the cause to end Duchenne. 

In the initial days following the Governor’s proclamation, I had a number of people ask questions about this nightmare and, in each case, those individuals at a minimum said they would pray for our efforts to be successful, sooner rather than later. From the reach-out of one ordinary person to the Governor to group attentiveness to invoking God’s grace and mercy, all in a matter of just a few weeks, demonstrates how exponentially impactful efforts of one person can become because such efforts simply are the right thing to do.

We want to make Duchenne awareness even more powerful by emphasizing how acts of kindness turn knowledge into action. Kindness can take the form of merely listening empathetically to a Duchenne parent/family member explain her/his anxiety over the child’s wellbeing without offering advice (since even well-intentioned advice can be misplaced if not downright hurtful).

Do not assume that teachers and school counselors have a clue as to how best to interface with a Duchenne child; that normally is not the case. Quickly come down on bullies; educate their parents. Invite the Duchenne family to participate in neighborhood and group activities with non-afflicted family members to maintain normal relationships with child and adult alike. Participate in the walkathons, runs, cook-offs, and other fun events that are ever-occurring to raise awareness and funds to combat Duchenne.

Let’s rally together to help spread awareness and end Duchenne.

In Kindness,

Papa in Tennessee

September, 2019