Stephanie Brochinsky Jenny
I knew something was wrong, truly wrong, the night of that Christmas party when Jason stood there, in front of the hotel’s massive bathroom mirror, unable to button the top 3 buttons of his dress shirt. However, I talked myself out of the gut feeling making my knees sway as I stood in front of him, lending a hand. “The dryer setting must have been too hot when it was popped into the dryer,” I thought to myself as I fastened button number one. I took solace in the fact his heart checked out to be fine as I secured button number two. “The bathroom was too hot – and his fingers were too sweaty to loop that bit of plastic through the impossibly small and tight loop,” I repeated inside my head finishing up with number three. Walking to the ballroom for the cocktail hour, I took solace in the fact blood pressure was perfect; no worry of stroke. Plus, the shirt was pretty new. The buttons were stitched on too tight; and the loops hadn’t been used enough allowing the necessary slack. And the fluorescent lighting wasn’t doing anyone any favors.
And, with every routine test coming back clear and blissfully uneventful, I was able to push away all of the data points. A dropped juice glass and fork bouncing onto the kitchen floor? That’s what happens when kids get older and you’re hustling around the kitchen at warp speed to make morning carpool on time. His penmanship wasn’t ever going to win any awards. I mean, that’s a given with doctor in front of your name, right? The stumbling? Easy. New sneakers plus news soles equals soles grasping the ground a little more than an older pair. That is, until the day of that pickup volleyball game. “I couldn’t hit the ball, Stephanie. I couldn’t even get one serve,” clinched a reality we didn’t know the details of, but, knew was coming with certainty. He felt uncoordinated. He felt weak. It was like his body wasn’t listening to his brain. This time, there was nothing to hide behind; nothing to explain away.
The neurological consultation was scheduled in record speed. A speed that was both comforting and alarming. The MRI and spinal tap happened even quicker. We had our answer. As of today, Multiple Sclerosis (MS) is a chronic, incurable, and often disabling disease of the central nervous system affecting the brain, optic nerves, and/or spinal cord. While a variety of treatments attempt to halt progression and reduce symptoms, there is no cure, yet, for MS; along with no full understanding of the cause.
As time has gone on, plans for doing a triathalon together were shelved. Passing the volleyball to the girls in the backyard became wobblier and wobblier, and then, impossible. Dictation quickly surpassed writing. That left foot? It became more stubborn and heavier each and every day; there was no getting around using a cane. The disease was progressing at an alarming rate. And, we have moved forward each and every time. Armed with the specifics. And an updated plan. A large part of our plan now includes The Tisch MS Research Center of New York.
The Tisch MS Research Center of New York is committed to finding both the cause and a cure. And I am committed to do everything in my power to make this groundbreaking research and treatment happen. With construction of a state-of-the-art Stem Cell Laboratory is underway, Dr. Sadiq and Tisch’s research team will begin the FDA-approved Phase II Stem Cell trial; an unprecedented step toward a huge milestone - the only MS trial to reach this stage in the United States. Funding this initiative is the next critical step to reverse disability and repair the damage caused by Multiple Sclerosis.
I am running this year’s New York City Marathon to make the dream of a future without MS a reality; for my husband, our family, and everyone else affected by this relentless disease. 100% of all funds raised will go straight to The Tisch MS Research Center of New York.
As a family, we choose to see this challenge as an opportunity. An opportunity to make a difference in finding not only the cause, but a cure for Multiple Sclerosis. While running The Hong Kong Marathon was for me, I am running New York for a husband and father who runs his own marathon each and every day. No excuses. All strength.
Time is of the essence in this pursuit and I will not look back wondering if more could have been done to make a difference both to us personally and overall. Last but not least, I am showing my daughters no one runs alone in life. Period.
Thank you for your support and being a part of something greater. And running with us.
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