‘He can focus on being a kid’: Nonprofit helps children with life-threatening illnesses

CHARLOTTE — Like most parents, Courtney Jones spends her days chasing after her 3-year-old son, Shivay. But since adopting him from India a year and a half ago, she’s also been balancing a strict medical regimen for him, too.

“We have many medications that he gets,” she told Channel 9 reporter Anthony Kustura. “He also has a feeding tube, so he gets most of his nutrition through that feeding tube. And then we see five different types of therapists every week.”

Shivay lives with a list of medical problems, including a heart defect, and he doesn’t have a spleen, which makes him immunocompromised.

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Despite the surgeries and medical appointments, they still try to find time to fit in some fun. An organization, new to the Carolinas, is working to help families like the Jones with that mission.

“We’re connecting them as a community, and they’re building support systems. The kids are building friendships with one another,” said Ed Paat, executive director of A Kid Again Central Carolinas.

The Jones just enrolled with the nonprofit, which connects families whose children have life-threatening illnesses.

A Kid Again offers adventures year-round at places like the zoo or Carowinds, where they will hold their first event on June 27.

'A Kid Again' helps families find time for fun Courtney Jones and her 3-year-old son, Shivay, at Carowinds Amusement Park. (WSOC)

“It’s a huge opportunity for him to live like any other child gets to, so we’re excited about that,” Jones said.

The events are free for the families, paid for by private donations and corporate sponsorships. Jones will get to meet others struggling with similar issues and Shivay won’t have to worry about a thing.

“He can just focus on being a kid and not focus on all of the ‘boo-boos’ as he would say,” Jones said.

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A Kid Again already helps families in Ohio and Pennsylvania. The organization said there is a strong need in the Carolinas, which is why they developed a local chapter.

Families with children aged 20 and younger who have a life-threatening illness are eligible to join. Click here for more information.