SEMINOLE, Fla. (WFLA) — A Pinellas County mother is in a desperate fight to keep her 4-year-old son healthy.
Gideon Bennett has a rare genetic disorder that makes even a small amount of protein dangerous, but the special medical food he needs to survive isn’t covered by insurance and time is running out.
“It is a rare metabolic disorder called phenylketonuria,” said his mother, Elizabeth Bennett.
This means he can’t properly process proteins.
“So, he can only eat seven grams of protein every day for the rest of his life,” Bennett said.
So how do you treat it? The University of South Florida College of Public Health is familiar with the disorder, and one professor said it requires a special formula.
“We don’t like for a child to have to be on special foods, but in this case, yes, they have that specialized formula to get the other parts of protein they need to grow,” Associate Professor Lauri Wright said.
Gideon’s mother said the medical food cost thousands of dollars.
Despite the need, she said Florida law doesn’t require coverage for the specialized food. Their household income exceeds the $40,000 to qualify for Medicaid.
A nutritionist at USF said the university has a clinic that caters to children with PKU like Gideon.
“We recommend, because of income level, if they don’t qualify for the health department, the state health department that they come to see USF and to the PKU clinic so that they can get help and support from the team,” Wright said.
The family has also started a GoFundMe to help support Gideon’s medical food and help him relocate closer to his metabolic clinic.
