9-year-old Jordy is flying high after battling rare genetic disease | 2024 Free Care Fund
The 71st Annual KDKA-TV Free Care Fund Telethon is this Thursday and all week, we're introducing you to some of the local children and families who are alive and thriving today thanks to UPMC Children's Hospital of Pittsburgh.
PITTSBURGH (KDKA) -- Nine-year-old Jordy Greene of Bridgeville enjoys playing with his friends, bouncing on the trampoline, and watching videos.
It's pretty standard for boys his age, but the fact that he can do that right now is a miracle.
"I've been going through a rare genetic disease," Jordy said.
At age 4, Jordy's pediatrician sent him to UPMC Children's Hospital of Pittsburgh because he was going down on the growth chart.
"They did some bloodwork, and then we got sent to the G.I. department because he was having a lot of stomach issues and losing weight," said Jordy's mom, Natasha Greene.
At first, doctors thought it was Crohn's disease and started to treat it.
"We were doing it for about a year when they said, 'Let's do some more genetic testing because he's so young to be diagnosed with Crohn's,'" Greene said.
That testing revealed something worse.
"We actually found out that he has a very rare genetic disease called XLP2. That was kind of a shocker for everyone because this is really rare. There [are] only maybe, like 200 cases in the world. And then, we found out the only treatment was a bone marrow transplant. It was scary. It hit everyone really hard. We knew our lives were going to change for a while," said Greene.
"I felt kind of shocked, and I felt happy because there's a cure. But I was still shocked and a little nervous that I was going to have to go through it. I wasn't necessarily scared, but I was nervous," Jordy added.
As terrifying as it was, Jordy's family knew they were in the right place at UPMC Children's.
"We didn't know what the outcome would be for Jordy, and then they reassured us that they could do a bone marrow transplant, that it is a cure, and that they were going to take care of him," Greene said.
And they did.
Jordy was admitted in June to get ready for the transplant in July. Then, he spent another month in the hospital recovering.
"You know you don't want to be there. You never want your kid to be sick. You don't want to stay the night there. I've never liked hospitals. When you're young, they seem so scary. But at Children's, they really make you feel like it's not scary, and that it's going to be okay. They had games for him to play. The nurses would come [to] play games with him. They would color with him. They would joke with him. They would tease him. And he liked that. It made him feel better while being stuck sitting in a hospital bed," said Greene.
"We played Uno, board games, and video games. They had music. They had stuff to draw, and that was fun," Jordy said.
"It was almost like a little vacation even though you don't want to be there," Greene added.
Eventually, it was time for Jordy to come home.
"We came home on Aug. 15, which was Jordy's ninth birthday. The neighbors all lined up on the street and had signs for him and balloons," said Greene.
"I did not know that all of my friends were going to come to my house and surprise me," Jordy added.
Although they still had to keep their distance for a while to give Jordy's immune system time to heal, as of mid-November, Jordy returned to school and started to hang out with his friends again.
"So far, everything's going great. He loves to go outside and play. His friends are usually at our door all the time. They're running around the neighborhood. He loves to play sports," Greene said.
While Jordy still has regular check-ins at UPMC Children's, the family feels they've finally turned the corner and are looking toward the future.
"He can accomplish anything. After what we've been through, I think that he's really strong and he can get through it. He'll do good in life. He's tough," Greene said.
So, what is on the horizon for Jordy when he grows up?
"I want to be a pilot."
Sounds like the sky is the limit for him.
You can help children like Jordy during the 71st Annual KDKA-TV Free Care Fund Telethon. The Free Care Fund at UPMC Children's Hospital of Pittsburgh ensures no child is ever denied medical care this Thursday.
Jordy is one of this year's junior co-hosts for the Free Care Fund Telethon.
Please join him and the rest of us from 3 p.m. until 8 p.m. on Thursday, Dec. 19 on KDKA-TV and donate to the Free Care Fund.