Children's Health

Father of NJ boy 'in fight of his life' after meningitis infection says he's making small strides

Jason Leider, pictured left in an undated photo and right after contracting meningitis, is in the fight of his life.

Jason Leider, pictured left in an undated photo and right after contracting meningitis, is in the fight of his life.  (Jason & Justin's Journey X2)

The father of a New Jersey boy who contracted meningitis during the first round of a long-awaited treatment for his life-threatening illness said he is only making small strides now.

“Jason is only making small strides now. He is in a lot of pain still and having difficulty sleeping, which means we don’t sleep,” Jeff Leider, Jason Leider’s father, posted on Facebook. “The doctors are still confident that he will be ok. It’s a very long rough road.”

Jason, now 8, and his younger brother Justin were first featured on in 2011 after they were both diagnosed with Hunter syndrome, a rare, incurable genetic disease that causes progressive brain damage. Patients diagnosed with the syndrome typically do not survive past their teens.

However, both boys are receiving treatment through 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 the ability to feed himself, before he had a second attempt. While the second attempt saw Justin successfully enrolled, Jason was randomly selected for the placebo control group and had to wait another year to start.

Two weeks ago, Jason finally underwent surgery to implant the device that would deliver the drug into his hip. Doctors now believe that during the surgery, he developed a staph infection that 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.

On Friday, Jeff told that his son was “still in for the fight of his life,” as doctors warned symptoms would likely worsen before they improved. According to a post from Jeff Tuesday, Jason is still suffering.

“All he does is cry, moan and call mommy or daddy [sic],” Jeff posted. “His outreach [sic] arms to us is really braking [sic] our hearts. Doctors have changed up his meds schedule hoping to lessen the pain.”

The Leiders are unsure of when they will be released from the hospital to return to New Jersey. Click here for more updates on Jason.