Parents of Harlan the Hero say more funding, awareness needed for pediatric cancers
EDITOR’S NOTE: An earlier version of this story listed the Baxter Trails CureSearch Hike is Sunday. The hike is is Saturday, Nov. 17.
Hikers will lace up their boots to trek 12 miles Nov. 17 at Baxter Village Trail in Fort Mill to honor and remember local children affected by childhood cancer. It touches particularly close to home for one York County family.
“Our main concern is knowing that childhood cancer research is vastly and consistently underfunded,” said Jonathan Sullins. “And our goal is to raise as much as awareness and money for that and to help out families.”
He and wife Jacki Splittorf-Sullins of Rock Hill founded Harlan’s Heroes, a nonprofit focused on creating awareness about pediatric cancer and providing aid to those affected by it with an emphasis on recurring and terminal brain cancer.
Every day 43 children are diagnosed with cancer. On Feb. 7, 2013, the Sullins’ 2-year-old son , Harlan, was one of those children.
For seven months, the toddler had been experiencing unexplained vomiting episodes.
“He’d had issues as a baby with reflux so the pediatrician treated it with antacids. He would get better, so we thought it was working. But then it would come back,” Harlan’s mother said. “Then it got to where he wouldn’t stop vomiting.”
The Sullins took Harlan to a cancer institution. They were told nothing was wrong with him, and he was merely seeking attention, they said.
Following a gastroenterologist’s recommendation, they took Harlan to Hemby Children’s Hospital where the emergency attending told them he wouldn’t let Harlan go until he figured out what was wrong.
“We were in the hospital for seven days before we found out it was a brain tumor,” Jacki said. “From there, the world got pulled out from under our feet.”
Harlan was diagnosed with a rare form of brain cancer. He underwent a successful surgery, which removed the entire tumor, followed by 33 radiation treatments and four rounds of chemotherapy.
But an MRI showed three more lesions.
They started over. Another surgery followed by more radiation and chemo. By the time Harlan returned home the second time, he’d lost his ability to walk and talk.
“He couldn’t communicate with us. He was a 9 month old in a 4 year old’s body,” Jacki said. “He couldn’t control his secretions, he drooled constantly. He’d lost all muscle tone in the back of his mouth, so if he drank from a straw it would come out of his nose.”
After his initial diagnosis, many nonprofits helped the Sullins. But when Harlan relapsed, the family fell into a gap. They couldn’t receive assistance again. Following Harlan’s death Oct. 25, 2014, his parents knew where their help was needed most.
“Jonathan and I both agreed that we need to help these families who’ve fallen into this gap,” Jacki said. “Because we’re not the only ones.”
Every year, the Sullins’ nonprofit Harlan’s Heroes organizes fundraisers for CureSearch, a childhood cancer research nonprofit that greatly impacted Harlan’s journey.
“Had it not been for CureSearch we wouldn’t have gotten the time we had with Harlan,” Jacki said.
The Baxter Trails CureSearch Hike is part of CureSearch’s Ultimate Hike program and celebrates National Take a Hike Day. A segment of the Carolina Thread Trail, the Baxter Village Trail winds through wooded areas and residential streets within the village. The trail is moderately hilly and passes several streams.
“In its eighth year, CureSearch’s Ultimate Hike is the only national hiking fundraiser dedicated to fighting children’s cancer,” said Brecka Putnam, CureSearch campaign development senior manager. “The Ultimate Hike program has raised more than $5 million for children’s cancer research to date.”
In its first year, Harlan’s Heroes drew 11 hikers and raised $11,000 for CureSearch. Just two years later in 2017, 56 people hiked the Baxter Village Trail and raised $56,000. This year’s event is expected to draw hikers from close to home and as far as Georgia and Indiana.
Jacki said the biggest fear of a parent who has lost a child is the world forgetting that child. Harlan’s Heroes helps the Sullins keep Harlan’s legacy alive.
“He’s not the first and he’s not the last who’s gone through this unimaginable battle,” she said. “Until the day I die, I’m committed to do anything in my power to try to save somebody else’s child so they never have to go through this.”
Want to hike or help?
What: Baxter Trails CureSearch 12-mile Hike
When: Hike begins at 8 a.m. Nov. 17.
Where: Baxter Village Hall, Fort Mill
Cost: Team members pay $50, and are asked to raise $500 for life-saving childhood cancer research
To register: Join the hike by registering at ultimatehike.org/baxtertrails. Registration closes at midnight Nov. 15. Hikers who use registration code TAKEAHIKE will receive a $50 fundraising credit.
More: Hikers will be required to wear a provided wristband, and complete the course within five hours. Email firstname.lastname@example.org to get involved with Ultimate Hike or learn other ways to support CureSearch. To make a donation to this year’s team’s efforts, text CURE to 56512.