Though often marked by various difficulties, for most children, growing up is a happy time. There are games to play, bugs to catch, presents to open and popsicles to be eaten. But for seriously ill children, life is not so much fun. There can be pain, surgery, drugs, tears and lots of visits to the hospital.
Laura Thompson knows all about such trials. Jessica, her 19-year-old daughter, has been dealing with a series of illnesses since she was 3 months old. “We knew something was wrong when she was just a baby; later she was diagnosed with a rare form of diabetes and endocrine issues. She’s also visually impaired to the point that she was in the blind program at school for several years. Her young life was spent in and out of doctor’s offices,” she shares.
Four years ago, a friend told the Thompsons about Carolina Sunshine, a nonprofit organization that grants wishes to children with life-threatening illnesses. Unbeknownst to Jessica, Laura applied for a wish to take her to Disney World, a place she had always wanted to visit. The wish was approved, and right before her 16th birthday, Jessica and her family were able to take a weeklong trip to the most magical place on earth.
Carolina Sunshine and its Orlando-based partner organization, Give Kids the World, paid for the entire trip, including transportation, lodging, entertainment and all the food they could eat. “It was wonderful,” gushes Jessica. “We went to SeaWorld and saw Shamu, Universal, Epcot and Disney. I got to eat ice cream every day and look through a telescope to see the moon. They left a little gift for me in the room every day. There was so much to do that I couldn’t choose.”
The trip was so meaningful to Jessica that for her birthday that year she asked friends and family to make donations to Carolina Sunshine instead of buying her gifts. “I want other kids to be able to do what I did,” she says.
Since it was founded in 1983, Carolina Sunshine has granted more than 800 wishes to sick children in South Carolina. The organization has no paid staff and zero overhead: all the work is done by the volunteer board, whose members also pay any expenses, such as tax preparation for the organization, out of their own pockets. They also host a yearly dinner at Camp Kemo.
“Every cent of the money we raise goes to fulfilling wishes,” says board chair Ron Asbill.
Although a trip to Disney is, by far, the most requested wish, the organization has also funded shopping sprees for school clothing or computers as well as visits to Washington, D.C. and New York City. They have purchased bedroom furniture, hospital beds and, in one case, installed a wheelchair-accessible pool in a child’s yard. Ron says that as long as the wish is for the child and not a family member, they’ll consider anything. So far, no child has been turned down.
“When you have a child with a life-threatening illness, generally, one parent must quit work to provide care. Pair that with the unbelievable cost of treatment, and there’s not much left for extras. We want to give them a week where all they have to do is love each other and have a good time,” Ron says.
Board member Stan Hickson first became involved with Carolina Sunshine when William, his son, was undergoing treatment for mitochondrial disease — a disease in which the cells that produce the energy needed to sustain life fail.
“One of our doctors offered to nominate us for a wish, which was to visit Disney,” Stan recalls. “For once, William got to be a normal kid. He was the center of attention, but in a good way. Our other kids loved it as much as he did. It was an extraordinary experience for our family.”
That was four years ago. After the trip, the Hicksons attended the organization’s annual black-tie gala. Before long, Stan was elected to the board. “There are a lot of children in South Carolina whom medicine can’t cure,” says Stan. “Carolina Sunshine provides hope when medicine can’t.”
Dr. Kierstan “Kiki” Lofton first heard about Carolina Sunshine during her pediatric residency at Palmetto Richland hospital. “I was on rotation with a doctor who was on the board,” she recalls. “He told me about the organization and said that I should go to the gala and learn more about it because at some point I might want to nominate a patient to receive a wish. The stories I heard that night were incredibly moving.”
Like Stan, Kiki was so impressed with what she saw that she soon found herself serving on the board. “These are kids who are not leading normal kids’ lives,” she explains. “The wishes give them something to look forward to besides just getting through the week. While they’re at Disney, the biggest decision they’ll have to make is which roller coaster to ride. These kids never have weeks like that.”
To be considered for a wish, children must be between 3 and 18 years of age and live in South Carolina. The wish must obviously be for the child and can’t be used for day-to-day expenses. Although the organization recognizes that there are many, many sick children in South Carolina with chronic, debilitating diseases, wishes are only granted to kids whose illnesses are life-threatening. Once a wish has been approved, which requires unanimous board consent, it is assigned to a board member who is then personally responsible for seeing it through, whether it’s setting up a weeklong journey or organizing a shopping expedition.
“We can’t wait to fulfill these wishes,” says Ron Asbill. “Sometimes I feel guilty because we’re getting so much more out of it than the children!”
Kiki Lofton agrees. “We get photographs, postcards and letters from these kids,” she says. “We’ve given them a way to be a regular family. It’s like a little bit of sunshine in a dark storm.”