SEMINOLE, Fla. (WFLA) – Seminole mom fights for her son’s health after a rare disorder relies on a strict medical diet. But now she faces an unexpected challenge.
This is about healthcare gaps that not only manage his condition, but could put his future at risk.
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Gideon Bennett was diagnosed at birth with a rare metabolic disorder that most people have never heard of. His mother, Elizabeth Bennett, said it controls every part of everyday life.
“It was a rare metabolic disorder called phenylketonuria,” Bennett said.
This condition means that a 4-year-old child cannot properly process protein, and can cause irreversible brain damage in just a few grams.
“So he can only eat seven grams of protein every day for the rest of his life,” Bennett said.
That strict diet costs money – her family carefully manages it. But now they are facing a new battle.
“He is currently receiving medical services for his children through Medicaid, but he is preparing to lose coverage. And we cannot find a single insurance provider that covers medical foods. “Bennett said.
Despite medical needs, she said Florida law does not require specialist food compensation.
Their household income exceeds the $40,000 limit to qualify for state assistance. This means that families like her will be paid out of pocket.
“I’m his mother. I’m supposed to be there to protect him, and the state is in my way to stop me from doing it,” Bennett said. I did.
His mother is looking for change. She said that families don’t need to choose between financial security and child health.
The family also launched GoFundMe to support Gideon’s medical foods and to help him move near the metabolic clinic. Click here to donate.
