Jack Drury came out swinging.
Born at just 33 weeks, the preemie shocked doctors by breathing on his own and leaving the NICU for his New Jersey home just 17 days later.
“They reassured us that he would be fine,” his mom, Kelsey Drury, told The Post.
And for a while, he was.
But over time, Jack stopped hitting milestones — and the joy of early triumph gave way to fear.
Then came the devastating news: The Drurys’ only child had a rare, terminal disease so aggressive, most kids don’t live to see their 10th birthday.
“I was having dreams of planning his funeral,” said Kelsey, 34, recalling the dark days after Jack’s diagnosis.
Now, against all odds, there’s a flicker of hope.
In New Jersey, a grassroots group is racing to launch the first clinical trial for a gene therapy that could give Jack — and others like him — a fighting chance.
Early signs, growing concerns
The Drurys first noticed something was off around 8 months, when Jack still hadn’t rolled over.
“He just kind of laid there and played, batting at objects that were above him,” Kelsey said. “Cognitively, he was there, he would laugh and look at you.”
At first, it was easy to dismiss — Jack was born two months early, and preemies often take longer to meet developmental milestones.
“He was right on target as far as fine motor skills and babbling,” Kelsey said. “But that was around the same time we started to notice that he was progressively getting more and more delayed.”
The Drurys enrolled Jack in feeding, physical and occupational therapy at 10 months, but no one could explain why he was falling behind.
“Not only did we not know about it, but the neurologist who shared the genetic results with us admitted she hadn’t heard of it before.”
Tim Drury
“We would do hours of PT, then go home and work on exercises. There was no progress at all,” Kelsey said.
“Eventually, he just never crawled,” she added. Instead, he mastered “butt scooting” to get around their South Amboy home.
At 18 months, things took a turn. Suddenly, Jack couldn’t put weight on his legs, let alone walk.
“I used to call him spaghetti man because when we’d try to get him to stand, his legs just collapsed,” Kelsey said. “That’s when we grew concerned.”
Hope and despair
The family was referred to a neurologist for genetic testing — but the lab lost Jack’s samples. For six long months, the Drurys were left in limbo.
“Some days filled with hope, others with really dark thoughts,” said Tim Drury, Jack’s father.
On July 1, a month after Jack turned 2, they got the diagnosis: infantile neuroaxonal dystrophy (INAD).
INAD is a rare genetic disorder that causes fat-like substances to accumulate on the nerves, disrupting signals and slowly stripping children of muscle control, vision, speech and cognitive abilities.
For a child to have INAD, both parents must pass on a copy of the faulty PLA2G6 gene. Carrier screening is available, but the process can be complex because INAD is so infrequent.
There is no known cure or treatment to slow the disease. Fewer than 250 kids worldwide have been diagnosed, according to the National Organization for Rare Disorders.
The diagnosis was crushing — a disease so rare, even their own doctors were stumped.
“Not only did we not know about it, but the neurologist who shared the genetic results with us admitted she hadn’t heard of it before,” Tim, 37, said.
Their pediatrician and therapists were just as clueless. But one doctor had heard about the INADcure Foundation and pointed the Drurys in that direction.
“It turns out, out of all the places in the world, the only foundation looking toward a potential treatment — and aiming for a cure — is based right here in New Jersey,” Tim said.
For years, the nonprofit has worked with scientists to develop a gene therapy designed to deliver a healthy copy of the PLA2G6 gene — the one affected by INAD — to the cells that need it.
“The goal is to address the root cause of INAD, with the hope of slowing or stabilizing disease progression,” Leena Panwala, the foundation’s founder and president, told The Post.
By the time the Drurys connected with the organization, preclinical trials in mice had shown promising results.
“Those that received the treatment did well, had longer lifespans and showed more motor function compared to the mice that didn’t,” said Dr. Darius Adams, a clinical and biochemical geneticist on the foundation’s Scientific Medical Advisory Board.
The nonprofit signed a deal with a drug manufacturer to produce the treatment, with Adams expressing “cautious optimism.”
Facing the unknown
One major hurdle remained: The foundation needed $450,000 to pay the manufacturer before the gene therapy could be released.
The Drurys funneled their emotions into action.
The family launched Jack’s Miracle Mission, sharing their story in a heartfelt video online. Kelsey expected them to receive a trickle of donations — not a tidal wave.
“It took us six days to close the gap on the $450,000,” Tim said.
What started as gifts from family and friends quickly snowballed into support from the community and even celebrities like “Real Housewives of New Jersey” star Danielle Cabral and Nicole “Snooki” Polizzi of “Jersey Shore” fame.
The INADcure Foundation is waiting on FDA approval to launch the clinical trial, with enrollment set to begin as soon as it gets the green light.
“They have a goal to start this early next year,” Tim said.
But with just 10 spots available, his son’s place isn’t guaranteed.
“Jack is one of the younger participants globally that they’re aware of, so I think there’s certainly potential that he’ll be part of this study,” Tim said.
The treatment will cost about $200,000 per child. Jack’s Miracle Mission is working to raise $2 million to cover the full cost of the trial.
“For children like Jack, knowing that this is a degenerative disease, they will lose skills and they’ll never get them back,” Tim said, noting that Jack can no longer scoot and is now struggling to hold his bottle and feed himself.
“We need therapy for Jack to start as soon as possible,” Tim stressed.
While the treatment isn’t a cure, it could buy patients more time as the search for one continues.
“Slowing progression could help children retain abilities longer, reduce complications and improve quality of life — outcomes that matter profoundly to families,” said Panwala, whose daughter has INAD.
Joy amid uncertainty
As they wait to learn whether Jack will secure a spot in the trial, the Drurys have shifted their focus to making every day with their son count.
“We all have a time that eventually ends,” Tim said. “Jack’s might be shorter than most of ours, but I want to fill the time that he does have here with as much love and joy as I can possibly provide.”
For Jack, that means “Baby Shark” on repeat, impromptu dance parties, Ms. Rachel on TV and belly laughs so hard they give him hiccups.
For Kelsey and Tim, it’s in every smile, every snuggle — and the outpouring of love from strangers who’ve rallied for their little boy.
“You see a lot of headlines in the news today about all of the hardships people face and the evil things that people do, but there’s an incredible side of humanity that we’ve been opened up to,” Tim said.
“People have the capacity to do incredibly kind things for one another.”
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