IPSWICH, Mass. - Classmates and teachers of an Ipswich 12-year-old who is battling a rare disease created a video they hope to go viral to raise awareness and fund a cure.
Talia Duff is one of just 22 people in the world known to have Charcot Marie Tooth, Type 4J (CMT4J), a neurodegenerative disease similar to ALS.
Talia, who was born with down syndrome, was diagnosed last year with CMT4J, causing her to lose muscle control and have difficulty breathing.
Because research for the rare disease is so underfunded, Talia's family began raising money for a cure. With the community's support, they raised about $500,000 but still need at least $1 million in total to begin human clinical trials, Talia's father, John Duff told Boston 25 News.
"Talia’s time is sort of running out," Duff said. "The progression of this disease for her, we don’t know how much time she has. And so every little bit counts."
Inspired by Talia's brave battle and her resilient spirit, her teachers and peers put together 300 jars of cookie mix to sell before the middle school's winter concert Wednesday.
"Scientists have the potential cure, and it's not funded. We are at the point where we need her to get the cure," said sixth-grade science teacher Samantha Colby. "Talia brightens up whatever room she goes into. She has the most beautiful smile you've ever seen."
Students and staff also promoted their video urging people to donate to CureCMT4J, which Talia's parents founded last year.
"It's so amazing seeing how a group of students can go together to help a friend," sixth-grader Amelia Mooradd said.
"It's so inspiring, because she's always so happy even though her muscles are weakening and it’s a struggle every day," friend Madeleine Gray aded.
Scientists have done enough research to believe the gene therapy in development could stop the progression of the disease and save Talia's life, her father said. The next step, once the money is raised and the treatment is developed, is to approach the U.S. Food and Drug Administration for approval to start human clinical trials, including Talia's.
Talia's father said his daughter's battle has been heartbreaking but the community's support has strengthened his family.
"When we first got the diagnosis, it was absolutely devastating," Duff said. "But the amount of support we get from our community and the hope that we have, the enthusiasm that we see in the people that help us, it really kind of lifts us up and carries us forward."
Donate to CureCMT4J here: http://www.curecmt4j.org/.
© 2018 Cox Media Group.