On Brave Wings:
Sloane Swanton’s Family Mobilizing Community for Rare Childhood Cancer Research It’s a story that cuts to the heart as soon as it’s started. A precious life ended early; a rare form of cancer with no business touching an 18-month-old; a family in tatters with no choice but resiliency; a Westerville mother looking to the community she loves, asking them to not look away when she speaks about her sweet angel, Sloane. Sloane Swanton. “After we had her, people would always ask, ‘how’s the baby?’ and I would say she was the best baby on the planet. She was just so happy all the time and had the most infectious smile,” said Sarah Swanton, Sloane’s mother. “Even when she was sick and in the hospital, she would wave to the doctors and nurses. She added something to our family I didn’t know we were missing until she was here. She had a smile that could light up a room and a cuddle that always put you at ease, she was so special.” On May 26, 2021, tiny Sloane was diagnosed with a rare brain tumor. It was a poorly differentiated clival chordoma, malignant cells that form at the base of the skull. Fastgrowing, malicious and incredibly rare in children under 5, chordomas occur in just one in one million people. Sloane is among one of the youngest children known to have battled this type of tumor. With her family by her side, Sloane fought bravely at Nationwide Children’s Hospital (NCH) through September 2021, when the battle ended and she was laid to rest. Steeped in grief and seeking solace in action, Sloane’s mother Sarah, father Mathew, sisters Cora (8) and Quinn (5) are navigating a way forward. “I had to try and find a way to give meaning to our tragedy,” Sarah said.
“There was so much we didn’t know when she was diagnosed. Unfortunately for us, with chordoma, there wasn’t much information out there,” she said. “We want to find a way to give back to the chordoma community and find ways to treat this awful disease.” On Sunday, May 22, the On Brave Wings Foundation will host the Sloane Swanton 5K Research Run at the Westerville Sports Complex (325 N. Cleveland Ave.). Money raised will help support pediatric chordoma research and the foundation’s ongoing work to support families. It’s one of many public steps the Swanton’s have taken to spread awareness. In September, just one week before Sloane passed away, the family attended a Westerville City Council meeting, accepting a proclamation for Childhood Cancer Awareness Month and using the opportunity to share Sloane’s story. Sarah understands that fundraising for childhood cancers could also be impacted by human behavior. Simply put, the stories hurt to hear. It’s natural to want to turn away at the thought. But families like the Swantons don’t have that choice and, really, neither do the communities around them. Avoiding the topic can unintentionally isolate a grieving family. “It’s nice to have people say her name; we want to talk about her all the time,” said Sarah. “It’s pretty lonely when you’ve lost a child and knowing people are there with you can make all the difference.” And so we say, her name is Sloane. They are the Swantons. We are Westerville, a community known nationwide for rallying around what matters.
One hard lesson learned during Sloane’s battle was that research is notoriously underfunded for pediatric cancers. According to the National Pediatric Cancer Foundation, only 4% of federal dollars allocated for cancer research are spent on childhood cancers. Experts point to the rarity of pediatric variants as a primary reason for this disparity. Sarah established the Sloane Swanton Research Fund through the Chordoma Foundation, which, as of this writing, has raised more than $51,000. Also, she founded On Brave Wings, a foundation to continue Sloane’s legacy by generating awareness, community and financial support for pediatric chordoma research.
SUPPORTING SLOANE Sloane Swanton 5K Research Run May 22 from 9 - 11 a.m. Registration: www.onbravewings.org/upcoming-events Sloane Swanton Research Fund https://impact.chordomafoundation.org/campaign/sloane-swanton-research-fund/c380531 8
Learn more about Sloane and how you can support research for pediatric chordoma at www.onbravewings.org.
