Sayreville Community Fundraiser Raises Nearly $7,000 for 2-Year-Old Jack Battling Rare Genetic Disorder

SAYREVILLE, NJ – A recent Sayreville community fundraiser raised close to $7,000 in support of two-year-old Jack Drury, as his family continues to navigate new medical challenges while pursuing a potential gene therapy treatment for a rare genetic disorder.

Jack was diagnosed last year with Infantile Neuroaxonal Dystrophy (INAD), a progressive neurological disease that affects the brain and nervous system. The disorder causes a gradual loss of motor skills, muscle control, and the ability to swallow and communicate, often worsening over time.

Following the fundraiser, Jack experienced a medical setback that required hospitalization. After a swallow study revealed he was silently aspirating liquids into his lungs, doctors placed a nasogastric (NG) feeding tube to ensure he could safely receive nutrition.

“He had a little setback and had to go to the hospital, but he is doing better now,” said Kathy Sierra, assistant director at Lightbridge Academy, Jack’s former school.

INAD affects approximately one in one million children worldwide. Because of its rarity, families often face limited treatment options and an urgent need for research funding to pursue experimental therapies.

There was also a significant development on the research front. According to Sierra, INAD representatives have officially submitted paperwork to the U.S. Food and Drug Administration seeking approval for a gene therapy clinical trial.

“If approved, this could possibly save so many lives of children affected by INAD, including our beloved Jack,” Sierra said.

Despite the medical challenges, those close to Jack continue to describe him as a joyful and affectionate child. In a recent post shared by INAD Cure, Jack was highlighted for his bright personality and love of everyday moments.

“Even with these challenges, Jack’s smile is bright,” the organization shared. “He loves cartoons, being held, and playing with his grandparents’ dog. His laugh fills every room he is in.”

As another way to support INAD research and raise awareness, Jack’s father, Tim Drury, has written a children’s book titled Jack The Lion’s Heart. The story follows a young lion who learns that life’s challenges can be met through friendship, laughter, and gratitude.

All proceeds from the book will be donated to support INAD research and families affected by the disorder. The book is available for purchase on Amazon at:
👉 https://www.amazon.com/Jack-Lions-Heart-Tim-Drury/dp/B0G3YVDQLM

Sierra said the continued support from the community has meant a great deal to Jack’s family during an incredibly difficult time.

“Every donation, every message, and every show of support truly makes a difference,” she said.

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