. . .against all odds. . .Sickle-Cell Disease

The first three words I’ve chosen to help introduce today’s post are associated with a number of creative projects by a variety of artists and organizations.  They are, however, an appropriate backdrop for the life my father lived to provide all he could for his wife and family.  ‘Against all odds’ also defines the struggle I observed, much later, as my son successfully navigated a life focused on family and career.

Today, I will talk about my son.  (Yes, my father’s stellar experiences are shared in Black Star Girl, my memoir.)

I had a son, John Darin Stith.  He was born in 1961.  He died in 2011. 

‘Darin’ was diagnosed with Sickle-Cell Disease at the age of 8 months.  We, his dad and I, had no previous knowledge about the chronic genetic condition.  Immediately we learned there was no cure and best-case scenario the life expectancy for our afflicted baby boy was 40 years.  ‘Not To Worry’ was our attitude and summarily optimistic response to the dire news.   “A cure will be forthcoming.”  We would do the very best for him – healthy regimens, food, exercise, environment, plus surround him with love, comfort, laughter, and care so when a sickle cell crisis did happen, with medications and treatment he would soon be back on the road to a normal life.

Treatment protocols did improve the prognosis for being able to delay and fight against the always-debilitating sickle-cell crisis events.   Hospitalization and intravenous fluids, pain medicine, antibiotics, plus oxygen and blood transfusions would get him back on his feet again.

A cure for Sickle-Cell Disease never came.

Through it all, year after year, Darin forged ahead.  He managed a quality life, focused on achieving his ambitions.  He pursued his education, fell in love, married, bought a home, and had two children; all the while my son worked and thrived in a business career he loved.

In between living this life, with little warning, sickle-cell crises would send him to the hospital’s emergency room then intensive care unit, cardiac care and at last, home again.  Each time there were very necessary new and precise diet plans and health management dictates to be merged into his daily habits.   All was critical in order for his body to compensate for various organs now functionally impaired due to a lifetime of crises resulting in a lack of blood and oxygen to those vital organs.

Against so many odds, my son survived to a within a few months of his 50^th birthday. 

In the end, his deteriorated heart and kidneys conspired to enable his final rest on September 14, 2011.

We mourn him, miss him, and cherish his memory.  I grieve for his presence and at the same time I know he does rest in peace.   I am grateful.

If you ever see an opportunity to lend a voice to the call for finding a cure for Sickle-Cell Disease, please do so.