Coronavirus 19 Will Pass

COVID-19. How best do we respond? 

Cable news, the government/medical alerts, and daily conversation are giving us context and, to a lesser degree, options. Nonetheless, public anxiety is palpable.  Tip: Faith and hope help.

Now, for Duchenne Muscular Dystrophy. Not new. Not short-term. Not fair. About 3,500 new children, mostly boys, born in the world each year have lethal Duchenne. There are thousands of young American youngsters declining with Duchenne. So, what’s the point?

Within the last three days, the FDA has fast tracked approval of test kits for COVID-19. Less than 3 days! Why so fast? A national emergency.

 Why can we not have Duchenne declared to be a national health emergency? So many young children are declining from a sad progression of clumsiness, to hip weakness, to loss of motor skills, to loss of legs, to loss of arms, to muscle paralysis, to increasingly sophisticated wheelchairs, to breathing machines, to cardiac support systems, to death … typically over a miserable 20-25 year lifetime.

Why is that sequence of horror also not a national health emergency in America? Simply does not make sense.

 A call to arms… to disease control/medical policy makers, concerned lawmakers and citizens, medical providers, researchers, and donors of the cause to end Duchenne … let’s fast track a cure to Duchenne! It does not need to be a shortened Life sentence for innocent children.

Kindly,

Papa of Tennessee