PITTSBURGH (KDKA) – Meet 6-year-old Rex.

He has a warm smile, but he’s facing huge challenges. Rex is fighting Late Infantile Batten Disease – a disorder of the nervous system that causes seizures, loss of muscle coordination and blindness. It progresses rapidly and there is no cure.

“At the beginning of the year, he would – Rex could walk with a walker,” his mother Autumn Timko said. “He could see, he could talk. Now he can’t do anything. He can hear, he can hear.”

Rex’s parents take care of him in their Elizabeth home with the help of home healthcare nurses on a rotating schedule. But a change in their insurance company’s guidelines means the home health nurses that have been coming in will go away – effective Dec. 18. That means all of Rex’s care will fall on his parents.

“He has zero muscle tone in his whole body,” Timko said. “He can’t support his head, or his neck or his arms. He’s kind of like a limp noodle.”

“We also then start his protocol of his nebulizer with his albuterol,” she added, “his chest PT to pound his chest.”

And there are meds, five times a day and food four times a day – all through the G-tube, suctioning as needed and one of the traits of Batten Disease is seizures, of which Rex has more than his share.

A spokesperson for Highmark explains the reason the Timko’s will be losing their home health nursing assistance:

“Administration of the daily treatment he receives does not need to be performed by a licensed practical nurse or a registered nurse or a registered nurse. However, there is an appeal process available if the Timko’s choose to use it.”

Autumn Timko says given her son’s deteriorating condition, she just wants help – and to make the most of the time she has left with her son, not fighting with insurance companies.

“We don’t have medical backgrounds,” she said. “We need help. We don’t ask for more than we need. We just need help.”

“He is sicker than he’s ever been and he’s not going to get any better,” she continued. “They don’t have a cure for the disease. They don’t even have a treatment.”

Timko did apply for an expedited appeal with Highmark in hopes of getting a reversal of the recent decision to eliminate their home health nursing support. The Timkos could get a decision on that in days.

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