Longtime Hampton Bays Family 'In Dire Need' Of Help For Son

HAMPTON BAYS, NY — A longtime Hampton Bays family needs help for their son, who is struggling with an illness that has made it impossible for him to walk.

A GoFundMe page, "A Wheelchair Accessible Van for Brandon," was created by the young man's uncle.

"This fundraiser is for the Allen family, longtime Hampton Bays residents, Randy, Cathy and their son, my nephew, Brandon," he wrote.

The Allens have been a longtime part of the local community with Cathy working as a teacher’s assistant for many years and Randy’s family history known for the “gone but not forgotten” Allen’s Acres motel, he said.

"As a child, Brandon was like any other healthy playful boy, who would later grow up to be an exceptional young man," he said. "Brandon, as a young teen, possessed a great sense of humor, with a lovable and companionate character for someone his age."

In 2008, Brandon graduated with honors from Hampton Bays High School, receiving the "Outstanding Student Award" for citizenship, scholarship, and physical performance, his uncle said.

"As a senior, Brandon began to develop a turning in of his feet that would worsen over time, making walking difficult, and underwent dozens of tests trying to figure out what was wrong," he said. "Originally, it was thought to possibly be some form of cerebral palsy."

Brandon was diagnosed with a rare neurodegenerative disorder involving the C19orf12 gene mutation, with iron accumulation in the brain, he explained.

"In essence, what this disorder has done is slowly taken away Brandon‘s ability to walk, talk, or function, to the extent that he needs around-the-clock care. With rising costs of care, Catherine has had to quit her job to take care of Brandon full-time. With Brandon’s condition worsening to the point where his legs can no longer support his own weight, he requires a wheelchair for all mobility and with recent changes due to COVID restrictions in New York, the pick-up services for medical visits and procedures are no longer available, leaving the Allen family in dire need to quickly purchase a wheelchair accessible van," his uncle said.

He added: "The medical expenses that are not covered by their insurance total $1,650 a month, on top of all of their day-to-day living expenses — and this has left them extremely strapped and the reason for this fundraiser."

The goal is to raise $60,000 for a new or used low-mileage wheelchair-accessible van, he said.

To donate, click here.

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