Not many members of the Westerville community met Sloane Swanton but they’ve embraced her memory, her family and their fight to raise awareness and research funds for the rare form of pediatric brain cancer that took her life last September.
The family is hosting the Sloane Swanton 5K Research Run on May 22 at the Westerville Sports Complex, where all proceeds will be directly donated to the Sloane Swanton Research Fund. They anticipated 150 participants would support their cause; so far, 450 people have registered — and now they hope to reach 500 runners and walkers.
“Sloane was born a week before the pandemic shut everything down so not many people got to know her and experience her beautiful soul,” Sarah Swanton, Sloane’s mother, said. “They only knew her through pictures, through social media. For all these people to find inspiration with our daughter that they’ve never met and to support us is humbling. It brings us some level of comfort knowing that they are saying her name, they are thinking of her and they are fighting pediatric cancer with us.”
Sloane, whose sisters attend Fouse Elementary, was diagnosed with a poorly differentiated clival chordoma on May 26 at just 14 months. Chordomas, a tumor based on the skull or spine, are typically slow-growing and found in older adults. It’s rare among children — it’s one in a million.
Swanton said there are few research papers to read on pediatric chordoma and Sloane’s tumor type was just recognized by the World Health Organization in 2019. There is no treatment plan for pediatric chordomas or even targeted therapies, she said.
Swanton said doctors treated Sloane with emergency chemotherapy, but she had to be put on life support because of the tumor’s pressure on her brain stem. After three months, the chemotherapy started working and Sloane gained back her ability to sit up and use her arms and legs again. Sloane’s tumor stopped responding to treatment and she had to be placed back on life support. The family sought radiation treatment for her but when she was transported to Ohio State Wexner Medical Center, she died en route to the hospital on September 14 — just four months after her diagnosis.
To honor their daughter, the Swanton family is dedicated to spreading the word about pediatric chordoma and supporting research to develop a treatment plan for children like Sloane who develop these deadly tumors. They started the On Brave Wings Foundation, which is focused on raising money to fund pediatric research. They worked with the Chordoma Foundation to launch the Sloane Swanton Research Fund. They donated Sloane’s tumor and brain to the Chordoma Foundation labs in Philadelphia so they can learn more about her tumor and research therapies to treat tumors like hers.
The Sloane Swanton 5K Research Run is the foundation’s inaugural fundraising event. The family plans to host one every year in May, which is National Brain Tumor Awareness Month.
Swanton said the family has received support throughout Westerville and even in her hometown of Marblehead, where the village is shutting down roads so 30 or so people can participate in the 5K from their area.
“We’ve been so fortunate that we’ve had so many people rally behind us, supporting us and supporting Sloane’s legacy,” she said.