CRESTVIEW — Uriah Oldacre knows that when his father is mowing the lawn he can’t go outside. When he’s caught a fish he can’t touch it and when he’s at the river he can only look at the water, never play in it.
The 5-year-old boy from DeFuniak Springs knows his limits because he has chronic granulomatous disease, a rare genetic disorder that prevents his immune system cells from functioning properly.
“There are things he wants to do, especially at the age he’s at, but he can’t do them,” Uriah’s mother, 29-year-old Jessica Oldacre, said at her son’s day care center in Crestview. “That’s why we are going through with the stem cell transplant.”
In May, the small brown-haired boy will undergo transplant surgery that will enable him to attend public school, play football and live a relatively normal life for a person with an immune deficiency.
“I’m scared to death,” said Uriah’s father, 30-year-old John Oldacre. “If you look at him, he looks healthy, happy. It’s a very scary thing to know your son has to have a transplant. I don’t really know how to prepare for that one.”
According to the National Institutes of Health, one in 200,000 people have Uriah’s hereditary disease, which leaves them susceptible to even the slightest infections.
His parents say the surgery is the best way to ensure he lives a long life.
The procedure is predicted to cost upwards of $30,000 after insurance, and his parents are asking for help to raise the money.
“They’re going to have to live in Bethesda, Md., until Uriah is able to come home, which will be about three months,” said Uriah’s maternal grandmother, Sue Lusk. “It’s not something they can afford.”
Uriah will be in the hospital for at least one month after the surgery. Then he and his parents will have to live off-site for another two months. Unlike families who can use hospital-funded facilities, Uriah must avoid any possible infections, which adds to the cost.
“I got in touch with COTA (Children’s Organ Transplant Association), and they’ve helped with fundraising ideas,” Jessica said. “Whatever happens, we’ll figure it out. We’ve got a few things in the works, then at the end of April we’ll see where we are when the dust settles.
“We’ll do what we have to do.”
Coming up is a bowling tournament April 20 at Shoal River Lanes Bowling, a golf tournament at DeFuniak Springs Country Club and a softball tourney in April. Jessica said COTA also has set up a website for donations to go through.
“Every dollar is accounted for by COTA and it’s all so that we can get Uriah this transplant and be there with him,” Jessica said.
WANT TO HELP?
Visit Uriah Oldacre’s website at www.cotaforuriaho.com.
Contact Daily News Staff Writer Angel McCurdy at 850-315-4432 or amccurdy@nwfdailynews.com. Follow her on Twitter @AngelMnwfdn.
This article originally appeared on Crestview News Bulletin: Son’s pending stem cell transplant leaves parents strapped