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2-year-old NJ boy in need of 'miracle' treatment
Two-year-old Jack Drury from New Jersey has been diagnosed with Infantile Neuro Axonal Dystrophy (INAD), a rare degenerative nervous system disorder with an average life expectancy of just ten years. FOX 5 NY's Antwan Lewis met Jack's parents, who are seeking a miracle through gene therapy. They have launched "Jack's Miracle Mission" to raise funds for a clinical trial, as the INAD-Cure Foundation works to increase awareness and support for gene therapy despite limited interest from drug companies.
SOUTH AMBOY - A two-year-old boy from New Jersey has been diagnosed with a rare nervous system disorder, which doctors say has an average life expectancy of just 10 years, and now, his parents are working to pay for a "miracle" treatment.
What we know:
Jack Drury has been diagnosed with infantile neuroaxonal dystrophy (INAD), which causes progressive loss of motor and cognitive skills, according to the National Institute of Neurological Disorders and Stroke. Sight and speech loss are common, and there is no known cure.
What they're saying:
Dr. Neil Hackett, an INAD researcher, said that as patients get older, they start to have problems eating food because swallowing properly becomes more difficult.
"You're unable to move eventually, and you are bedridden, and your parents have to look after you all the time," he said.
Drury's family is hard at work trying to raise money for a possible gene therapy treatment. They have launched "Jack's Miracle Mission" to raise funds for a clinical trial, as the INAD-Cure Foundation works to increase awareness and support for gene therapy.
"I think we both realized that there's no way that we could control the situation. We could just control how we responded to it," Tim Drury, the boy's father, told FOX 5 NY's Antwan Lewis.
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"I used to look at him and I used to wonder, like what are you going to be like when you grow up and what are you going like? Are you going play soccer like I did? Are you gonna play lacrosse like daddy did?" Kelsey Drury, the boy's mother added.
Kelsey Drury said that hearing of her son's life expectancy was "really, really heartbreaking as a mom."
"You no longer wonder what they're going to be like when they grow up, you wonder how long they're going to live and if they're going to make it to their 5th, 6th, 7th birthday," she said.
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Dr. Hackett said that interest from drug companies in the gene therapy for INAD has been limited, but that researchers have hope given the results they've seen on mice.
"What we know so far is we have mice that have the disease and we've given them gene therapy. And the mice who get the gene therapy do much better than the ones who are untreated," he said.
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What you can do:
The INAD-Cure Foundation is still several million dollars short of their goal, although they've so far raised nearly $530,000.
To donate, click here.
The Source: Information above was sourced from FOX 5 NY reporting and the National Institute of Neurological Disorders and Stroke.