Duchenne Cannot Become a New Normal



A Life-Changing Call

Just going about an ordinary day at the office and I get a call from my wife of over forty years.

“Our grandson has Muscular Dystrophy. It is the worst kind, Duchenne, always fatal.”

I normally do not hang up on people; I hung up on my wife. Normally I do not scream, especially in an office environment; I hollered out in severe pain. I am a pretty steady individual; nonetheless, I emotionally fell into a deep, black abyss. Almost vomited. Throat tightened. Stomach churned. Hands shook.

Weeping is not normal behavior for me … regardless of the bad news. Here, I balled for what seemed to be an hour, in my office, behind a closed and locked door. Leaving the office early is not normal for me; on this day, I left early.

My wife and I embraced, cried and cried some more. She tried to fill in details learned from our daughter but could only talk in sentence fragments. My heart fell into fragments.

Needing to be with Family

I immediately drove to my grandson’s home and what, thankfully, was normal about this terrible day was when our grandson enthusiastically entered the home after school and jumped into my arms and joyously exclaimed, “Papa!”. I finally felt a moment of much welcomed normalcy in the form of a child’s love.

Grandson Hayes had no clue that something was wrong with him… just like us, before that day. My daughter remained steadfast, at least in the face of her son, during the early weeks after revelation and maintained as much normalcy for our grandson as she could muster under those inexplicable circumstances.

My son-in-law and I immediately immersed ourselves into due diligence: We studied the excruciatingly slow pace of testing and test approvals of treatments for Duchenne (with no cure in sight) over the last few years, met with Duchenne parents near where we live and, very importantly, attended a four day annual conference of the Parent Project Muscular Dystrophy foundation in Orlando where we were schooled by foundation leaders, Duchenne parents, doctors, clinical test staff members, statisticians, pharmaceutical reps, and other stakeholders, and prayed … a lot.

Back to ‘Normal’

I dug in. The only way I could return my emotional state and home life to some reasonable semblance of normalcy was to immerse myself into research and the objective assessment of the lifestyle progression of the dreadful disease, trying at the same time to ignore the pharmaceutical companies’ frustrated run towards finding safe and worthwhile treatments for Duchenne in hopes of reaping large financial gains during the quest. I focused on initial practical steps which we as a family could take to ease our grandson’s introduction to the fact that he is different in an ill-fated manner. Thank goodness he also is different in terms of being so bright and scientifically curious.

Normalcy is relative. Am I still dark … No. Worried, sick … Yes. Do I still weep … certainly on the days when I am reminded of how loving, bright and spirited my grandson is juxtaposed against the degree of body deterioration and level of discomfort that lie before him.

Hope lives. There presently is an emerging serious development of a clinical test trial platform that, when implemented, could bring together all real time data and resources helpful among the searchers of truth to mitigate Duchenne and its effects which just might pave the way for the discovery, approval, and ultimately affordability of treatments that may buy us some time for a cure or cures to be discovered (hopefully while there is still time for grandson Hayes and his similarly affected peers).

I once heard it said that, “Normal is an illusion. What is normal for the spider is chaos for the fly.”

Living with Duchenne

What now should be my role with respect to helping mitigate and eventually ending Duchenne? As normal, be a loving and supportive father, a fun and teaching grandfather, a patient and empathetic husband, an effective professional person, a dutiful citizen, and a faithful believer. We must stop this abnormally dreadful killer of young boys (and girls) and the dreams families carry with each newborn child.

I pray for the kindness of others to share in our cause and God’s grace during this unwanted journey that we are taking on for our grandson and for all families dealing with Duchenne and its currently inevitable death sentence. We need a cure, sooner rather than later.

Living with Duchenne should not become our new normal. Dedicating my remaining life to ending Duchenne is my new normal. Others’ talents and kindness, our family love, and God’s grace will be the arrows in my quiver as I go hunting for treatments and cures for Duchenne. The Duchenne community is rededicated to raising public awareness about this terrible disease. Hayes and similarly affected children may overcome Duchenne but only if stakeholders in this quest focus on exercising best efforts and give generously of their time, talents, resources, and positive energy to stop the suffering that the Duchenne monster so dreadfully causes.

For Hayes and his very special peers, I pray and ask that we as a community double down on efforts to exchange information and build awareness about this most lethal form of Muscular Dystrophy to help cure and end Duchenne. Read more blogs and get Hayes updates at RallyforHayes.com.

Papa in Tennessee
September 11, 2019

Blog post submitted by guest author for TheDashPoem.com.

Duchenne - Hayes

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