Race against time: ‘Jack’s Miracle Mission’ aims to support children with progressive disease
Jack Drury has a rare disease known as infantile neuro-axonal dystrophy or “INAD.”
More Stories
A South Amboy family is in a race against time to save the life of their 2-year-old son.
Jack Drury has a rare disease known as infantile neuro-axonal dystrophy or “INAD” – which attacks muscle function and cognitive skills. It’s an illness which could take his life before he reaches the age of 10.
The family has launched a site called “Jack’s Miracle Mission” with the goal of raising $2 million to help 10 families. It would allow those children to take part in a gene therapy clinical trial for a drug which could save their lives.
Jack’s parents explained the rush to move quickly with fundraising because they’re already seeing the effects of the disease in their little boy.
“From 18 [months] to 2 [years old], I would say it was more of a plateau, he just didn’t really gain any new skills at all. We can tell that he’s getting frustrated with his limitations,” said mother Kelsey Drury.
“This is a progressive disease and anything the child loses, it can never get back – so time is really important here,” said his dad Tim Drury.
The Drury family is working closely with the INAD Foundation based in Fairfield, New Jersey which supports a total of 36 families across the globe who are coping with this disease.
Tim Drury says FDA approval of this potential break-through drug is expected at the end of September. The clinical trial could start next year.
