Fundraiser for local teen with rare genetic disease being held

EAST GREENBUSH, N.Y. (NEWS10) – A community is coming together this week for a local high school student suffering from a rare genetic disease.

As her family tries to maintain her quality of life, they’re also trying to keep up with medical bills and other added expenses.

“When Amanda was about three or four we started to notice that she was falling a lot and her pediatrician thought it was normal developmental things,” Amy Palma said.

Palma says for years, they traveled to children’s hospitals in Boston and Philadelphia desperate for a diagnosis with no luck.

It wasn’t until 2015 when a geneticist at Albany Medical Center was able to determine that their little girl was suffering from an aggressive form of Friedreich’s ataxia.

“It is a progressive disease so we can anticipate that Amanda’s needs will become greater.”

The 14-year-old is now confined to a wheelchair and has slowly started losing her eyesight, her hearing, her speech and even the ability to swallow.

They’ll now need to purchase a wheelchair accessible van and modify their home.

“There are a lot of different costs that you wouldn’t necessarily think of that come along with this, traveling out of town to see doctors, taking off time from work.”

That’s where Team Amanda comes in. They are an incredible group of teenagers who have made it their mission to help out.

So far, they’ve donated proceeds from the talent show at Columbia High School and within the last month or so, they took it upon themselves to go and speak to local businesses collecting donations. They’re organizing a ziti dinner fundraiser set for this coming Wednesday.

“It can be hard, but my friends motivate me to keep going every day,” Amanda Palma said.

As her best friend since 3rd grade, Alicia Langenbach says they want to make sure she is living her life as normal as possible.

“It’s hard. She’s amazing, she does everything for me,” Langenbach said.

“They’ve known her since she was little and accept her unconditionally. I can’t even begin to express how thankful we are.”

The ziti dinner will be held at the Phillips Road Firehouse in East Greenbush from 5 to 8 p.m.

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