By Dave Andrusko
I took a quick peek this afternoon at the Facebook page Grayson Kole Smith’s parents use to update followers about their six year old’s progress. Yesterday’s post, typically delightful, ends
Also Grayson has two front loose teeth! He has told mama and daddy that each tooth is worth 40 bucks for the tooth fairy! No cavities and brushes everyday. This kid has his argument down solid to justify getting some big bucks! He’s wants them out now! Will post pics of our big boy when they do decide to come out as we are watching carefully so he does not end up choking or swallowing them…( I’m not digging thru poop for the tooth fairy…. ok for him I probably would ).
Just another day, right? Well…. Consider…
Grayson has the kind of devastating disease so overwhelming that at his birth, doctors told parents Jenny and Kendyl to put him on end-of-life-care and say their goodbyes. A disease so rare it is named after him [“Grayson Syndrome”].
But unlike the predictions that Grayson would survive (at best) a month, here he is six years later.
To be clear, this little champion has faced and overcome incredible odds. While undergoing 36 surgeries with more to come, Grayson has learned to speak.
The list of ailments he was born with is formidable. As Jack Longstaff wrote
Little Grayson Kole Smith was born blind, deaf, missing a third of his skull, with a hole in his heart and with several severe facial, spinal and cranial deformities.
But this medical miracle continues to wow doctors. Says Mom Jenny, her son is the only person ever known to have all of these birth defects. As she told Longstaff
“There is no one else to compare him to.”
“He is a ray of light and is always smiling, no matter how much pain he might be in.”
“He is so special to us and is our little miracle.”
“He is the candle that never goes out no matter how hard you blow.”
The youngest of four children, there was no reason in advance to think anything was amiss with Grayson. But on February 15, 2013, when Grayson was born, Longstaff reports, he was
barely breathing, with swollen eyes, a malformed head and “scary” facial disfigurements, his mum said. Fighting for his life, Grayson was transferred from the small hospital in Georgia where he was born to a bigger hospital in Alabama. Jenny said: “I was shocked and devastated.”
Grayson has undergone a battery of surgeries, including 26 on his brain or skull. The last one in which surgeons took parts of his ribs to close the gap in his skull, was considered life-threatening.
“We were told he wouldn’t survive the operation and we accepted that he was probably going to die,” Jenny told Longstaff. But Grayson, again, made it through!
Jenny and dad Kendyl told the newspaper that every surgery, hospital trip, and hour of care provided to Grayson has been “worth it” if it means they get to spend as long as possible together.
Moreover, “Grayson doesn’t let his condition stop him,” Jenny said.
Longstaff concludes his moving portrait of the family by saying of Grayson
He doesn’t see himself as different and we all just treat him as a normal person.”He’s a popular kid and has lots of friends.”He knows everyone is different.
But he is special in his own way.
“I cry a lot when I see him in pain and I do wish I could take the pain away from him” [said Jenny]. “It has been one big emotional struggle for us and we know so much can happen at any time.”
“The most important thing to us is Grayson is able to live a happy life. Every day counts for something and every day is special for him.”
Fox News’ Alexandria Hein ended her story with a fitting tribute:
But day-to-day life for Grayson doesn’t include time for self-pity, according to his parents, who keep his supporters updated on the “Grayson’s Story” Facebook page. In a special Fourth of July post, Grayson recited the Pledge of Allegiance for his followers.