An Aiken 4-year-old battling a rare disease only wants one thing: MAIL
Monday, May 4, 2020
News 12 at 6 o'clock/NBC at 7
AIKEN COUNTY, SC. (WRDW/WAGT) -- Two months after being diagnosed with a devastating disease, a 4-year-old in Aiken County should finally start treatment this week. And his parents are asking everyone for one simple favor.
It's hard not to smile if you spend any time with Graylon Posey.
"Yeah," Kelsey, his mother, said. "He's a ball of energy."
He's also quite the entertainer.
"Ladies and gentlemen!" Gray said.
"Ladies and gentleman?" Kelsey laughed.
And even though our Meredith Anderson was trying to interview him, Gray seemed more interested in interviewing her.
"How are you?" Gray asked.
"I'm wonderful," Meredith said.
But you probably can't tell Gray isn't feeling wonderful. Doctors say he's actually in a lot of pain.
"He's very stiff. He can't lift his hands like above his head. All these joints are just real tight. His hands are curled," Kelsey said.
It's called Hunter's Syndrome or MPS Type 2 -- a rare genetic disorder often compared to Alzheimer's in children.
"The average lifespan for somebody with MPS is 10 to 20 years old. It's pretty devastating," Kelsey said.
There is no cure, but Gray needs weekly infusions to help slow the disease down. Unfortunately, those transfusions have been slow to happen in the middle of a global pandemic.
"I've been on the phone, it seems like all day every day, just trying to figure out when to we're going to start these infusions," Kelsey said. "He was diagnosed in March, and here it is May, and they just keep telling me hopefully next week.'"
These infusions will last six to eight hours. That's a long time for anyone to be hooked up to an IV. So his family had an idea -- to ask people for cards to read.
"Tell her about all the cards you got," Kelsey said to Gray.
"Lots of presents," he said.
"You got lots of presents," Kelsey said.
Gray's parents have now set up his own P.O. Box so they can pack a bag of cards to open during his treatment.
And sure, it's May. But if you have any Christmas cards, we have it on good authority Gray will really likes those.
Gray shares the joy of Christmas with his big sister, Kami, and his parents daily. It's A good reminder for all of us during these uncertain times.
We encourage everyone to please share Gray's story on social media. It will be fun to see where some of Gray's cards are from.
PO Box 185
Graniteville, SC 29829