Local Young Man With Rare Disorder Desperately Needs Help

HAMPTON BAYS, NY — When a longtime Hampton Bays family reached out last year, in need of help for their son, who was facing a rare neurological disorder, the community wrapped them in their collective embrace.

But now, their son is facing a new, daunting challenge, and once again, the family has asked for the support of friends and neighbors during their darkest hours.

A GoFundMe Page, "Help Bring Brandon Allen Home," was created by Catherine Allen. So far, $4,875 has been raised out of a $50,000 goal.

"First and foremost, the Allen family would like to sincerely thank everyone that had helped make our fundraiser last year an amazing success!" Catherine wrote. "Even though we didn't hit the mark, contributors will be elated to know that we worked out a deal with a dealership with the funds raised, to purchase the wheelchair accessible van the Allen family so desperately needed. Our Hampton Bays community really came through for us and we will be eternally grateful."

One year later, though, the new round of medical expenses are daunting, she said.

"Due to a recent medical mishap, while Brandon was undergoing a procedure, the Allen family is now needing to raise funds to cover costs for round-the-clock medical care that's not covered under their current insurance policy," she said.

Due to the new challenge, Brandon will now have a tracheotomy and a respirator, which will require specialized home nurses set in place at the Allen home, 24-7, at a cost of roughly, $4,200 a week, she said.

"Brandon cannot be discharged and come home until this care is set in place," the page said. "This new fundraiser will go to help cover these new expenses, just until new Medicaid protocols are set in place, that will pick up these new costs so that Brandon can come home as soon as possible. Thank you all in advance for your continued love, generosity and support during this very stressful time and please help us share this GoFundMe page with anyone that may be able to assist. God bless."

Last year's GoFundMe, created to help find 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 compassionate 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," his uncle said.

Last year, the goal was to raise $60,000 for a new or used low-mileage wheelchair-accessible van, he said.

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