Newspaper article The Record (Bergen County, NJ)

Elmwood Park Boy with Rare Disease Battling Back Infection

Newspaper article The Record (Bergen County, NJ)

Elmwood Park Boy with Rare Disease Battling Back Infection

Article excerpt

Jason Leider, a 9-year-old Elmwood Park boy with a rare, deadly genetic disease, was heavily sedated and asleep Wednesday after falling very ill -- shivering, his fever spiking to nearly 105 -- from meningitis a day earlier just as he was receiving a long- awaited treatment for his disease, his father said.

The new infection dealt a cruel blow to the Leider family, who had flown to a hospital in North Carolina expecting Tuesday to be a day of celebration: After years of waiting, Jason was finally going to get a promising drug that his doctor says could halt the progressive brain damage from Hunter syndrome, and even allow him to live beyond his teenage years. Even his sister, Jordan, 4, and their grandparents traveled with them for what was expected to be a joyous moment, said Jeff Leider, Jason's dad.

But Tuesday turned into a blurry day of alarm, tears and prayer as Jason's fever spiked to 104.8 degrees, and he suffered "extreme headaches," Jeff Leider said.

The meningitis is believed to have originated from the device that was implanted in Jason's hip two weeks ago to deliver the drug. He underwent surgery Tuesday evening to remove the device.

The infection had been festering in him for those two weeks and happened to flare the day he received his first dose of the drug, Jeff Leider said.

"We got lucky because we were here," he said by phone Wednesday evening from North Carolina Children's Hospital.

Doctors say that in two or three days, the boy's own antibodies will kick in, and Jason is expected to be in the hospital for days after that, Jeff Leider said.

Jason's long journey toward receiving the drug was chronicled in The Record, and Jeff Leider said he was grateful for the outpouring of support he's received from friends and strangers. "It's nice to know that there are some really great people out there," he said.

Hunter syndrome is a disease affecting 400 to 500 children -- mostly boys -- across the country, and in Jason's severe case, it has robbed him of basic skills he once had, such as the ability to feed himself or to hold a pencil.

Patients with the severe form of the disease -- something Jason's brother, Justin, 6, also has -- gradually lose mental functioning until they die in their teenage years. …

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