Aiden Beers will mark two milestones this January. The first — his 11th birthday — will likely involve pizza, movies and a gathering of his 5th-grade Nelson Elementary classmates.
The second will happen two days later, more than 250 miles away from his family’s home in Sullivan — a surgery they hope will change Aiden’s life.
The cost of the surgery will be covered, in part, through proceeds from the 2019 Red Cap Run, a charity race that helps local families in need.
Aiden was born with spina bifida, a condition that made his spinal cord bulge out of a hole in his lower back. He has undergone 11 surgeries, including one while he was still in utero, to close the hole and correct other symptoms associated with the condition.
Spina bifida, a rare disease affecting an average of 1,645 births per year nationwide, can lead to varying degrees of paralysis, learning disabilities, increased cranial pressure and more, according to the Centers for Disease Control and Prevention.
There’s no cure for spina bifida, the CDC notes, but by repairing the hole and addressing symptoms of the disorder, people who have it can live well into adulthood and lead full lives.
Aiden’s next surgery, scheduled for Jan. 16 at St. Peter’s Hospital in New Brunswick, N.J., will address one of those symptoms: His spine is tilted in a condition known as scoliosis, causing him to hunch when he walks. The operation, which isn’t covered by insurance, will repair his back without impeding his movements, his mother, Jamie Beers, said.
The family has already raised around $40,000 or $50,000 through Facebook and other donations from community members to help offset the surgery’s approximately $60,000 cost, Beers said Monday night.
And earlier this month, the Body & Soul Road Runners, a running club and nonprofit group that organizes a charity race for local families in need, announced the Beers will receive proceeds from the next annual Red Cap Run. The 2019 run will be held on Saturday, Feb. 9, at 10 a.m. in Keene. This year, the Road Runners will also hold a pre-race celebration on Friday, Feb. 8, at the Courtyard by Marriott Keene Downtown in Railroad Square. The Marriott will donate proceeds from drink and appetizer sales that night to Aiden’s family, according to Red Cap Run organizer Sara Alderfer.
Alderfer is also the owner of Body & Soul Personalized Fitness, the Keene business that’s the running club’s namesake.
“Let’s raise a ton of money so they can focus on Aiden and not have as much financial stress as they cope with paying for a surgery not covered by insurance,” the event’s Facebook page says.
Alderfer said the Road Runners learned of Aiden’s upcoming surgery through a story in The Sentinel in October. She said she reached out to Jamie Beers that same month.
In a text message to The Sentinel Monday night, Beers said she was overwhelmed and humbled when Alderfer told her that her family had been selected to benefit from the run.
Alderfer said the Road Runners choose a local family for each Red Cap Run that would benefit from a one-time donation to help get them through a specific crisis.
“Always with these families, their initial reaction is to say, ‘Thank you so much for thinking of us, but isn’t there someone else who needs it more?’,” Alderfer said. “And (Jamie Beers) had that initial reaction.”
Alderfer said she assured the family they are, in fact, a good fit. The goal, she said, is to raise about $50,000 for the Beers.
Proceeds from the Red Cap Run will help the family cover the cost of the surgery and other associated expenses, Jamie Beers said. Aiden is expected to spend five to seven days in the hospital’s intensive care unit after his operation, she said, and will then have to stay in New Brunswick for at least a few days before he’ll be well enough to travel home. She anticipates he’ll be out of school for about a month.
The Red Cap Run, now in its fifth year, began as a fundraiser for the family of Keene resident Kenneth C. “Kenny” Valenti Jr., who was killed in a work accident in 2014. Valenti was known for wearing a red cap, inspiring the race’s name, according to Alderfer. That first year, the Road Runners raised more than $15,000 through race fees and sponsorships and about $45,000 on the crowdfunding platform GoFundMe, she said.
Since then, the Road Runners have helped three other residents and their families, including Jennifer J. Goguen McGrail, a young mother who had advanced breast cancer, and Susan L. “Sue” Wells, who had amyotrophic lateral sclerosis (ALS), a progressive and ultimately fatal disease of the nervous system. McGrail, of Keene, died in April 2016, and Wells, of Keene, died last June. This year’s Red Cap Run helped Lisa Lancey of Richmond and her family. Lisa and her husband, Calvin, were involved in a 2017 motorcycle crash in Epsom, which resulted in Calvin’s death and left Lisa with a shattered pelvis, among other injuries.
The 2018 race drew almost 500 people, according to Alderfer, and this year, organizers expect to have even more participants, particularly because the race has become more well-known. For the dozens of volunteers who put the event together, Alderfer said, the Red Cap Run is a gratifying opportunity to bring the community together.
“It benefits us in a different way than it benefits the family, but I don’t think it’s in any lesser way,” she said. “There’s something that’s really rewarding and satisfying to be able to do this for a family who needs that help.”
The 2019 Red Cap Run’s Facebook page says the race will feature a 5K run or walk for adults and a 1-mile kids’ run, followed by an after-party.