Summer Camp Fund

When kids are sick or disabled, summer camp makes all the difference

J.T. McVey, who’s 13 and lives in Charlotte, battles Juvenile Idiopathic Arthritis, an auto-immune disorder that affects every system in his body. At Camp Victory Junction, he doesn’t have to wear his brave face and tell other people he’s fine.
J.T. McVey, who’s 13 and lives in Charlotte, battles Juvenile Idiopathic Arthritis, an auto-immune disorder that affects every system in his body. At Camp Victory Junction, he doesn’t have to wear his brave face and tell other people he’s fine. Courtesy of J.T. McVey

If Divyne Killian could borrow any superpower from Spiderman, it would be his Spider-sense.

“So I could see what my opponent is going to do,’’ he explained. “You know how bullies are when they try to bully you? I’d see them before they bully me.”

Divyne’s had some experience with bullies. The biggest, Sickle Cell Anemia, started attacking when he was an infant. He also has asthma and epilepsy and has spent a lot of his childhood in the hospital with his mother on constant vigil.

When he goes to Camp Victory Junction, they both relax.

This summer, in true Spiderman form, he rode a zip-line for the first time. He bowled in a real bowling ally, practiced archery and played Ping-Pong. And he made friends who understand what it’s like to live under the shadow of a serious illness.

“It was total freedom,” he said.

J.T. McVey, who’s 13 and lives in Charlotte, battles Juvenile Idiopathic Arthritis, an auto-immune disorder that affects every system in his body. He goes through a weekly regimen of chemotherapy and biological therapy so he can walk and function. It’s hard medicine that leaves him without an immune system, so he’s home-schooled, his mother said.

At Camp Victory Junction, “He doesn’t have to wear his brave face and tell other people he’s fine, or be upbeat for people who don’t understand,” Genie Hepler said. “There, everybody understands. It’s so much more than a fun camp, it really nurtures the souls and emotions of people who go.”

This year The Charlotte Observer’s Summer Camp Fund is sending 10 kids to Camp Victory Junction, a NASCAR-themed wonderland for children with illnesses and disabilities. They’re among more than 1,000 kids heading to 37 camps because readers and the community donated money to send them. It’s a record number of children served after a record-breaking campaign last year.

Last week’s Summer Camp story told readers about a challenge grant that will enable the fund to receive an additional $25,000 if this year’s campaign hits its $190,000 goal.

Since then, the fund has received 43 generous contributions, including an anonymous $20,000 donation, enabling up to 75 more children to attend camp next summer. But the fund is still about $37,000 short of the goal with just a few weeks to go. There are many more children the camp fund can serve if the target is reached.

It’s tough to measure the true costs of having a sick child. For parents, it’s physically and emotionally draining to juggle medication, hospitalization and worry. It can also be a huge financial burden of co-pays and costs not covered by insurance. Parents often miss work or even quit jobs to take care of the child.

Camp Victory Junction doesn’t charge families and relies on donations to give children a week at camp. The camp in Randleman, near Greensboro, was built to honor Adam Petty, who died in a racing accident at age 19. A member of NASCAR’s famous Petty family, Adam had been planning a camp for sick children before his death.

Their illnesses range from Type 1 diabetes to Stage 4 cancer. Victory Junction has full-time nurses and a pediatrician on staff. Kids get their medications when they go to the dining area for breakfast and lunch, and from nurses in their cabins in the evening.

Counselors are mostly college students studying nursing, social work or child development. Some are former campers in remission from their own illnesses.

It’s a theme park in the midst of 84 acres of hills and woods. There’s a super dome for indoor kickball and softball, a gym, a theater and a water park. Kids take therapeutic horse rides; spins around a Lazy River, and enjoy games and doughnuts at a weekly carnival.

“The things we take for granted are something they are experiencing for the first time,” said Mark Schumacher, Victory Junction’s chief development officer. “It is truly a life-changer.”

Nina James says her joy over the birth of her son, Divyne, turned into stark fear when he was diagnosed with Sickle Cell Anemia as an infant. The disease causes irregularly shaped blood cells that aren’t healthy enough to circulate oxygen through the body. In the United States, African-Americans are most at-risk of inheriting the genes that cause it. There is no cure.

A single mother, James said Divyne spent so much of his early childhood in the hospital that she had to quit her job of 15 years. “It was overwhelming, I always had to take off — you’re on call all the time.”

At home in Charlotte, Divyne, now 12, gets frustrated with his illness. It causes severe pain through his back and legs and sometimes leaves him unable to walk for days.

His asthma exacerbates the condition. They’ve had many scares along the way, and his treatment requires blood transfusions every three weeks. He’s missed so much school that he had to be held back a year. It’s hard for him socially, and some kids taunt him about it, James said.

Yet he’s got a personality that cheers people up, she said.

“He’s a clown…he’s very funny. At camp he is more himself, just really, really happy and so full of joy. He comes back carefree. That one week is good for him, it’s something he really needs. He hates that it has to end so soon.”

maryedeangelis@gmail.com

To give to the Summer Camp Fund

Donate at charlotteobserver.com/summercampfund. Or send donations to The Summer Camp Fund, P.O. Box 37269, Charlotte, NC 28237-7269.

Each Sunday during the drive, the Observer will list contributors in the Local section. If you wish to make an anonymous donation, indicate it on the “for” line of your check or on PayPal, note your preference in the special instructions field. To donate in honor or in memory of someone, use the “for” line or special instructions field. Donations are tax-deductible and are processed through Observer Charities, a 501(c)(3).

If you have questions about your donation: 704-358-5520.

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