An emotional moment — and a reminder there are good folks out there
I was thrown for the proverbial loop the other day.
See, I pay attention to social media and I see such rancor, such spite and divisiveness, I forgot something.
As Luke Bryan once sang, most people are good.
I guess I needed a jolt of goodness. And, boy, did I receive one.
But a little background first. Going on 20 years ago, my daughter Camille passed away from SMA – Spinal Muscular Atrophy. As you’d imagine, I carry a love for her soul and a hurt from her departure.
After her passing, I tried to get folks to understand SMA and how it’s more prevalent than anyone seems to know. I wanted to bring attention to it, so maybe, perhaps, one day there would be a cure and families wouldn’t have to go through such heartache. It is, after all, the leading genetic cause of death for infants.
A sports columnist at the time, I was able to put together a golf tournament to raise awareness. Then-WVU coach Rich Rodriguez and then-Marshall coach Bob Pruett joined the effort and played a round with winners of a raffle at Pete Dye Golf Club. Overnight accommodations were also included.
I bring this up because I watched a video that rocked my emotions to the core. It was of NBA star Luka Doncic and a boy named Chris, who was born in 2018 with SMA, the genetic disorder that starts in the central nervous system and affects all the muscles in the body.
The family, like Doncic, hails from Slovenia. The family found there’s a drug – Zolgensma – that treats SMA. But it’s the most expensive drug in the United States with a price tag of $2.1 million.
Well, Doncic heard the story and made a call to action. He donated. And in 2019, Chris was given an infusion of Zolgensma. The gene therapy not only stabilized Chris but led to improvement. He was soon seated on the court of a Dallas Mavericks game.
I ask that you watch the ESPN report:
I was rocked in my seat at the report’s end. I was taken back and yet forward thinking a cure has been found or something close – if the cost can be minimalized.
The next night, my Facebook page reminded me another birthday is fast approaching – like Thursday. It asked if I wanted to list a fundraiser for my birthday.
I’ve never done that. But I typed in Cure SMA and, voila, it popped up. I listed it.
And within 5 minutes $220 was raised.
I was stunned. I figured if anything, we’d raise $40-50 dollars.
But by the end of the night, $510 had been raised.
It made my heart happy.
Because people still care.
Good people are still out there.
Luke Bryan, you were right.
