PITTSBURGH (KDKA) – The outpouring of support for 6-year-old Rex Timko of Elizabeth and his family has been heartwarming.

There have been offers to volunteer time to, ideas on how to staff already in place and even offers for financial support.

But there have also been a lot of questions about why Rex’s current insurance doesn’t cover in-home nursing care.

Rex needs a lot of support. He was diagnosed with late infantile Batten Disease at the age of 3. It’s a disorder of the nervous system that will progress. He has already lost his sight, control of his muscles and has as many as 250 seizures a day.

“It’s a brain disease that kills one brain cell at a time,” said his mother Autumn Timko.

For Rex, that means being dependent on his parents, or caretakers. But that care could fall only on his parents. Because insurance that provides for home health nurses to come to the house, could be going away.

“I love him,” Autumn Timko said. “I can hold him, I can kiss him, I can sing to him, put him in his bed, read him books. But I am not a substitute for quality medical care.”

But it turns out the Timkos aren’t unique. Many families with dependent children find themselves in this situation. An insurance company spokesperson explains it this way: If services a person is receiving can be performed by a trained family member, those services will not be covered. Decisions about coverage can also be determined by your company policy – not just the carrier.

Individuals may be eligible for supplemental coverage from Medicaid, but that doesn’t always fill in the gaps. In the Timko’s case, it doesn’t. Which is why some families feel overwhelmed by the growing needs of dependent children or even adults.

“I feel like I’m going insane all day long,” Timko says. “We’re like stuck in this nightmare. Everybody wants to help us, but nobody can.”

Late Tuesday, the Timkos learned their home health nurses have been extended for 90 days. A final determination on their appeal could come as soon as Wednesday.

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