Boston school holds fundraiser to help teacher whose child has rare disease

BOSTON — Students at a Dorchester high school raised money Thursday for their beloved teacher's baby boy who is fighting an extremely rare, fatal disease.

The kids at Boston International High School organized a talent show, performing, selling food and collecting money for baby Purnell Sabky, as his mother, Taylor, proudly watched.

"Ms. Taylor is one of the most amazing person in this school, and shes always smiling," said her student Jessica Andrade, who credits Taylor with helping her graduate. "She's always telling us not to give up."

Purnell, who is just 13 months old, has Niemann-Pick Type A, which some call "Baby Alzheimer's", a disease so rare only a handful of children in the country have it at one time.

Niemann-Pick Type A is caused by a genetic mutation that prevents the body from metabolizing fat, leading to build-up around the organs, including the brain.

There is currently no treatment available, and, if nothing is done, doctors do not expect Purnell will make it to his third birthday.

But a groundbreaking gene therapy treatment is in development right now, and Purnell's parents hope he will be the first child cured of the disease. The only roadblock is funding: they need $750,000 by June 30, before it's too late.

Because decline typically begins between 15 and 18 months old - as soon as six weeks from now - the Sabkys are rapidly raising money through the Save Purnell Today GoFundMe account, as well as events such as Thursday's fundraiser.

"We just don't know when things are going to take a turn," Taylor said. "We are running out of time. The clock is ticking to get him this treatment."

Taylor's students raised more than $1,600 in cash and checks. By Thursday night, the Sabkys had raised about $400,000.

These kids are incredible," Taylor said. "They've overcome a lot of obstacles just to be here, and they have their own difficult circumstances that they're dealing with. And they put them aside, and they say, 'Miss, we're gonna raise you up.' Ad that's what they've done."

The funds will go to the Wylder Nation Foundation, a non-profit founded by the family of a boy died of the disease in 2009. The foundation is working with the researchers at the University of California San Francisco’s Bankiewicz Laboratory to make gene therapy a reality for Niemann-Pick patients.

If funded, researchers will build the clinical-grade vector that delivers the treatment. Then, the team must finish safety studies and work to gain Federal Drug Administration approval for the investigational drug, before the clinical trial can begin.

As Taylor and her husband Sam spread their story every day to give their son a chance at life, they are also starting cognitive therapy to delay their son's neurological decline.

The Sabkys have already raised more than $400,000, their deadline is June 30. If you'd like to donate, click here.

Cox Media Group