Throughout his six months of battling myelodysplastic syndrome —a form of pre-acute myeloid leukemia associated with Down Syndrome — at UNC Hospitals, William Erkkila often has turned around his bad days by breaking out his dance moves.
“He can’t walk, but he can dance,” said Kaitlin Erkkila, the 2-year-old’s mother.
During the weekend, William showed off his moves at the annual Dance Marathon. The goal: raise money for more children like him.
Using a video stream, the youngster joined more than 2,000 University of North Carolina at Chapel Hill students who pledged to stand for 24 hours during the fundraiser that benefits the patients and families at North Carolina Children’s Hospital.
The Dance Marathon ran from at 7:30 p.m. Friday to 8:00 p.m. Saturday at Fetzer Gymnasium. Participants were required to raise at least $150 and remain on their feet for the entire length of the event through dancing, a sunrise walk and games.
In its 17th year, the marathon is the culmination of a series of events hosted by the Carolina for the Kids Foundation throughout the year including the Kilometers For The Kids run and benefit auction.
But for the foundation, which is the largest student-run fundraising organization in the state, the Dance Marathon is the main charity event.
“A huge amount of our fundraising is from dancers,” said Brendan Leonard, the publicity chair for Carolina for the Kids.
Since the inaugural Dance Marathon in 1999, the foundation has raised $4.28 million, including $551,595 last year. The proceeds go directly to helping the families at the children’s hospital by providing hot meals for parents and helping pay bills. This year, funds are also being directed toward the opening of a pediatric clinic in Chapel Hill.
The Ellis family from Cary has seen firsthand how the Carolina for the Kids Foundation’s efforts can help families through difficult situations. Clark and Kathy Ellis’ son Jake was born eight weeks premature in 2009 and spent two weeks in the Newborn Critical Care Center. Jake was in and out of the children’s hospital the following three years and needed three surgeries.
“UNC Health Care does a really good job of treating the whole family, not just the patient,” said Clark, who has been involved with the foundation since 2010. “Carolina for the Kids fills in some of the gaps to make it more effective.”
Among the foundation’s primary initiatives is Parents’ Night Out, which provides a hot, healthy meal for the parents at the hospital. Erkkila, who regularly attends Parents’ Night Out, said the meal helps pull parents out of the hospital room to socialize and connect with new people while solving the daily issue of finding time to eat.
“It’s one less thing that you have to worry about and plan for,” Kathy said. “It’s taken care of for you and it makes that day so much easier. You’re in the hospital with your child and all you can think about is their health and their progress and getting better. It’s just so helpful to have the problems solved.”
Carolina for the Kids’ work doesn’t stop at financial support. Volunteers also spend time at the hospital playing with the children — including dancing with William — to help the families through the challenges.
“These children are really struggling,” Erkkila said. “But [the foundation] comes in, they know us by name, it feeds us. They’re tangible. They’re here.
“They care about the kids and they care about what they’re doing. They enjoy the kids and know the families. They know William’s name and it feels like a second family. They’re just remarkable.”