LANCASTER, N.Y. — As families got together to celebrate during the Easter weekend, little Bentley Hayden's mother was scared that this might be her last Easter holiday with him.
"My heart's just shattered and I kind of feel, you know, everything is darkening. It's not really like a celebration," Krystal Hayden said. "It's like this may be my last Easter with my son and I'm spending it fighting with insurance."
Holding back tears, Hayden said that a potentially lifesaving treatment for her son is not covered by her insurance.
Four-year-old Bentley has a stage 4 neuroblastoma, and Hayden said he's not responding to treatments or chemotherapy.
Their only option now is a clinical trial-type treatment that his doctors say could save his life.
"The treatment has never been done on pediatrics. It's been done on like adult cancers," she said. "His tumor tested positive for it so we submitted the paperwork for insurance."
The New York mother said their insurance company would not cover the treatment because it is "not medically necessary."
Fidelis Care went on to say in the denial letter that the treatment is experimental, and that Bentley does not have the type of tumor the treatment is intended for.
It adds that it's unclear how safe or effective it might be.
"They're saying that it's just an experiment, and why waste the money if there's no guarantee? But with cancer, nothing's guaranteed," Hayden said.
Last week, Bentley had emergency spinal cord surgery at Sloan Kettering hospital in New York City to remove the tumor, which was growing larger.
Without coverage, Hayden said the treatment would cost $85,000 a dose — and Bentley needs two.
"He's got a smile that lights up the room, and a laugh and a heart of gold," she said. "And he's just ... he's doing well but hurting."
She's started a GoFundMe page to help raise money for the treatment.
WKBW reached out to Fidelis Care for a comment but haven't yet heard back.