Oliver Kingery cannot be around large groups of people because of the two rare conditions he has, but today was different.
Dozens of people got together to help out his family, and Ollie was one of them.
KSNT News spoke with his mom about why having him there was worth it no matter what.
From the outside, you’d see Oliver Kingery as your typical two-year-old.
“He’s a joy to be around,” said Maren Kingery, Oliver’s mother.
But there’s more to his story.
“It’s when we have to go to our five therapies a week, and doctors appointments every two weeks, said Kingery. “He has blood drawn every week, that you start to realize he’s not a normal two-year-old.”
The two-year-old has severe congenital neutropenia and Schwachman-Diamond Syndrome. He also has epilepsy and air way disorders on top of that. At any point that he has an infection, it could unfortunately be the last one.
“We’ll never know until that day,” said Kingery.
After doctors in Kansas could not treat him, the family traveled to St. Louis and then got transferred again to Denver. Oliver now makes that trip every three months, and sometimes even more depending on his condition.
“We’re going to be about 20-grand out of pocket at the end of genetic testing,” said Kingery.
For the last five years, the Frozen Water Bowl group has been picking out a child with cancer or, in Oliver’s case, an extremely rare disease, to support with their disc golf fundraiser.
“We try to keep it in the disc golf family,” said Bren Nordgren, the organization’s director. “We’ll put out feelers every year and see if anyone knows of anybody.”
All the money raised from the tournament’s entry fees will go to Oliver.
“My goal for my son is to get to kindergarten,” sid Kingery. “And I would love that goal to be high school.”
Oliver was able to come out today because cold air kills germs. He wears a backpack that has feeding tubes, but you’d never know because he looks as happy as can be.
You may have heard of cystic fibrosis. Oliver’s disease is even more uncommon than that.
His mom said there are only five kids diagnosed with Schwachman-Diamond Syndrome in the state of Kansas.
If you would like to help the family with their medical bills you can do so at their PayPal account here.