New Jersey boy diagnosed with incurable genetic disorder in 'fight of his life'

(FOX NEWS) -- A New Jersey boy who waited years to participate in a clinical trial to treat his life-threatening illness is facing yet another hurdle after contracting meningitis during surgery to implant the device needed to receive dosage.

"He is still in for the fight of his life, and he's still in a lot of discomfort and pain," Jeff Leider, Jason Leider's father, told The Leider family was first featured on in 2011 after Jason, who is now 8, and his younger brother Justin were diagnosed with Hunter syndrome, a rare, incurable genetic disease that causes progressive brain damage. Patients diagnosed with the syndrome typically don't survive past their teens.

Jeff, along with his wife, Deena, sought to enroll their sons in a clinical trial to test a drug called idursulfase-IT. Jason's first attempt was pushed back after the trial was put on hold. It would be three years, during which he would lose his cognitive skills as well as his ability to feed himself. The next attempt was successful for Justin, but the randomized selection of patients saw Jason placed in the placebo control group for another year.

Two weeks ago, Jason underwent surgery to implant the device that would deliver the drug into his hip. Doctors now believe that during that surgery he developed a staph infection, which later progressed to Group B strep meningitis. Jason began showing symptoms as he prepared to receive his first dosage at North Carolina Children's Hospital.

"Just before he went in for his first dosage, under anesthesia, he started to shiver and was running a slight fever," Jeff told "They thought it was just because of nerves. Kids like this that are in the hospital a lot develop 'hospital syndrome,' where they're nervous, they know where they are, they know something is going to happen, they don't know what, but they know it's going to be bad."

When Jason came out from anesthesia, his shivering got worse. When doctors took his temperature, it registered 105 degrees, and a subsequent blood culture confirmed bacteria was present and had entered his spinal fluid. Jason is currently suffering from severe headaches and neck pain, and hasn't been able to eat since Tuesday. Doctors administered a feeding tube to Jason, and are now formulating a pain management plan because morphine and Tylenol have stopped working.

"The meningitis did also enter into his bloodstream, so he's getting hit on both ends," Jeff said. "He's a mess."

Jeff said despite the latest blood cultures not having any signs of the bacteria, the next 24-36 hours will be the toughest for his son as he continues to recover, as is the case with meningitis.

"Even though the latest blood culture is not showing any signs of bacteria as of yet, which is a good sign, the toxins and everything else in his system is creating havoc," Jeff said. "We're not out of the woods with meningitis yet."

Doctors have since removed the device from Jason's hip, and the next dosage, which he will receive next month, will be administered via spinal tap. In three months, as long as he responds to the antibodies he is currently on, they will reinstall the device.

"He's a little boy, he's 8 years old-- will be 9 in August-- and it breaks your heart," Jeff said. "He should be out with his friends, eating ice cream in the middle of summer, and he's here, fighting for his life."

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