Seminole, Fla. (WFLA) – A mother in Pinellas County is in a desperate fight to keep her 4-year-old son healthy.
Gideon Bennett has a rare genetic disorder that puts small amounts of protein in danger, but the special medical foods he needs to survive are not covered by insurance and time runs out.
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“It was a rare metabolic disorder called phenylketonuria,” said his mother, Elizabeth Bennett.
This means he cannot properly process the protein.
“So he can only eat seven grams of protein every day for the rest of his life,” Bennett said.
So, how do you deal with it? The University of South Florida University of Public Health is well-versed in the disorder, and one professor said that special ceremony is needed.
“We don’t like having kids to drink special foods, but in this case, yes, they have a special formula to get the other parts that need to grow,” says Lori. “Associate Professor Wright said.
Gideon’s mother said the formula costs thousands of dollars.
Despite the necessity, she said Florida law does not require specialist food compensation. Their household income is over $40,000 to qualify for Medicaid.
A USF dietitian said the university has a clinic that caters to PKU kids like Gideon.
“Because of income levels, if they are not qualified for the health department, the state health department recommends that they come to see USF and PKU clinics so that they can get help and support from the team. I’ll do it,” Wright said.
The family also launched GoFundMe to support Gideon’s medical foods and to help him move near the metabolic clinic.
