Six Months is a Long Time

My personal progression this first year of learning of my grandson’s diagnosis of Duchenne has resembled an extreme rollercoaster ride. It started with shock, anger and fear upon learning of the diagnosis in late April. Woeful sorrow and a fight against constant anxiety followed. Then, I embarked on a learning curve and joined the Duchenne community. Recently, I have re-dedicated myself to making each day count without worrying too much about the future and have delved into an advocacy to end Duchenne. All within just the initial six months since we learned of this tragedy on April 25th.

Meanwhile, the Duchenne monster has steadfastly progressed through the body of our very much loved grandson Hayes. Weakness progresses at glacial speed. Thank goodness his keen mind and spontaneous laughter are not affected. 

A lot can happen in six months. Only six months after Pearl Harbor was attacked, the temporarily crippled U.S. Navy significantly neutered Japanese naval forces in the Pacific. The first six months of 2009 saw the U.S. economy extricate itself from a Great Recession that had cost over 18 million Americans their jobs, devalued home values, and closed long-standing financial brokerages. On a lighter note, sports teams that many folks follow can go from also ran programs from the prior season to a champion during the next season based on what happens during the six month off-season.  

What can we do over the next six months to improve and grow our efforts to end Duchenne, recognizing that the Duchenne monster is not going to rest during that timeframe? 

To begin, let’s keep up with research and clinical trials, not just in the U.S but worldwide. Not only labs in Los Angeles and elsewhere in the U.S. but also in the U.K. and Canada are coming up with some intriguing new data. Support recently growing efforts for a database platform to be developed whereby essentially ALL new data and test results, wherever derived, become real time centralized into one library or repository accessible by anyone who may benefit from the additional findings. Push aside egos, territorialism, and funding concerns as all of us in the Duchenne community on the globe learn to benefit from the synergies that centralized knowledge relative to Duchenne can bring.  

Keep talking and writing. Teach the public. Raise awareness of Duchenne wherever our personal acquaintances and daily activities thrive. In the last six months, I have yet to find one single person who did not show interest in the subject of Duchenne IF I brought it up. Bring it up whenever and wherever possible, however it may be possible!  

Make every day count with the Duchenne child in our families. Every day. My grandson’s infectious laughter when I do the simplest or silliest things has become as important to me as food and water for my human and emotional nurturement.  

Let’s make the next six months count in a real way towards ending Duchenne.  

Kindly,

Papa in Tennessee