9-Year-Old Fights Spinal Meningitis and Hunter’s Syndrome

August 6, 2015

Jason Leider, a 9-year-old Elmwood Park boy with a rare and deadly genetic disease, had surgery Tuesday evening after developing an infection during a long-awaited treatment of a potentially life-prolonging drug in North Carolina.

Just before 10:30 p.m., his father Jeff posted an update on Facebook saying his condition was “not good. He has spinal meningitis they don’t know what strand yet.”

The family said more would be known about his condition Wednesday, but early in the day Leider said on Facebook that there was no update yet.

His mother, Deena Leider, said on Facebook that meningitis was initially confirmed after his spinal fluid was tested.

“Jason has developed a very serious & dangerous infection,” she wrote on Tuesday, adding that the family, which was scheduled to return home on Thursday, would be in North Carolina “for quite some time.”

Jeff Leider wrote on Wednesday morning that Jason’s younger siblings, Justin, 6, and Jordan, 4, were taken back to New Jersey by their grandparents, while their parents stayed in North Carolina.

“Back to hospital with JJ,” he wrote, referring to Jason by his nickname. “NO UPDATE YET.”

Jason was the subject of a front-page article in The Record on Tuesday detailing his long journey toward receiving the drug, idursulfase-IT, which his doctor says has the potential to halt his progressive brain damage. His incurable condition, Hunter syndrome, which affects 400 to 500 children nationally, has reduced his IQ score to 46, and he has lost the ability to hold a pencil, eat on his own or express himself, aside from saying he’s hungry or cold.

Patients with the severe form of the disease, which Jason has, suffer neurological losses and typically die in their teenage years.

After years of setbacks and delays in the family’s fight to enter Jason in a clinical trial testing the drug — their efforts including sharing their story with the director of the FDA’s Center for Drug Evaluation and Research, members of Congress and the pharmaceutical company that makes the drug — Jason was finally due to receive the idursulfase-IT on Tuesday at the University of North Carolina-Chapel Hill, where his doctor works.

The plan is for Jason to receive monthly doses of the drug until it’s proven effective and enters the market, possibly in two years.

Jason’s parents placed great hope on the drug’s potential to not only stop the disease’s progression, but to recover some of the skills and intelligence Jason lost. The boy’s doctor said the drug appears to stem patients’ brain degeneration, offering hope they could live longer. He said the priority is to prevent further losses of brain function.

Jeff Leider said in the article that the real Jason had been “masked by this disease,” but with the treatment, “I’m finally gonna meet my son.”


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