The parents who receive grants from a New Jersey fund that helps cover costly medical care for their children shared their stories at the Statehouse Tuesday.
Wall Township resident Michael Wright said the Catastrophic Illness in Children Relief Fund helped him after two emergency surgeries for his son who has cerebral palsy. The bill was $200,000, he said, but his insurance covered only $5,000.
“The fund is wonderful at negotiating medical bills down with doctors,” Wright said. “We had our bill negotiated down almost 90 percent of the original bill. It’s a complete burden off of myself and my family.”
Randolph resident Jacklyn Greenberg contracted a virus when she was pregnant, and her 4-year-old son has needed a lot of care ever since his birth.
“You think that you make smart choices, and you plan, and then life just smacks you,” she said. “And we never anticipated the costs of the therapies, the home modification, the doctors’ appointments, the surgeries.”
Greenberg said the fund has provided the support her family needs.
Edison resident David Siegelman’s daughter was diagnosed with auto immune liver diseases when she was 16 years old and got an infection every three weeks that put her in the hospital. Even though he had insurance, Siegelman said he was left with a tremendous number of bills the fund helped him resolve.
“The tolls, the parking, the mileage, the stuff that normally doesn’t come in to factor. What about the meds? You had co-pays. Anything that the fund could do to help take some of that burden off was so greatly appreciated,” he said. “Thank you so much for not raiding those funds for other things.”
Grant recipients who met with Lt. Gov. Kim Guadagno hope the event will raise public awareness about the fund that has distributed more than $2 million in grants in the first half of the budget year to 120 families.
Claudia Marchese, the fund’s executive director, said a potential repeal of the Affordable Care Act could have an impact.
“Of course, if less people have insurance, if they have children, more of them will apply. Since Obamacare was passed, we’ve actually had more applications,” she said. “Most people who need us have insurance. It’s just that insurance doesn’t cover everything when your children are this sick.”