Florida Mother of Boy with Disorder Seeks Solution for Medical Food Problem

Jennifer Gonzalez says the formula her son relies on for his meals has changed

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    NEWSLETTERS

    A mother is at Miami Children's Hospital speaking with every expert she can, desperate to find a way to nourish her 3-year-old son, as her stockpile of the one food her son can stomach could disappear by October. NBC 6 reporter Justin Finch interviews the mother, Jennifer Gonzalez. (Published Friday, Jan 4, 2013)

    A Florida mother is desperate to find a way to nourish her 3-year-old son, as her stockpile of the one food he can stomach could disappear by October.

    Michael Gonzalez has energy to spare on the playground, and he’s too young to know his body could soon give out. But it's all his mom, Jennifer, thinks about.

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    “I need to take all these moments and treasure them,” she said.

    Michael is one of a small number of kids worldwide suffering from a disorder called Food Protein Enterocolitis Syndrome. It is like a stomach bug, only permanent – and with no cure.

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    “He starts screaming and crying. He has vomiting, diarrhea with mucus and blood,” said Jennifer Gonzalez, whose family lives in the Fort Myers area.

    There's no food that won't make Michael sick, so his only meals are from a UK-made formula called Neocate Junior. But Gonzalez says she and other parents have realized the formula has changed.

    “They smell different, they mix different, they taste different,” she said.

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    She said she believes the formula may have changed from a corn starch to a rice protein mix last spring. But reaching out to Neocate's maker, and the Food and Drug Administration to rerelease the old formula has been fruitless, Gonzalez says, as lives hang in the balance.

    “All of our children are going to die. That’s not OK,” said Gonzalez, who is speaking with every expert she can at Miami Children’s Hospital.

    She argued: “They recall toys because there's lead in yellow paint, in case the child eats it. But a medical food that's prescription, they're not going to recall that?”

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    Gonzalez enrolled in nursing school to help her son, and networks with families around the globe in similar predicaments. Back in the Fort Myers area, her husband's a firefighter, and his insurance can't cover all the costs. So, some South Florida advocacy groups are stepping in to help, and hope you can too.

    “We have immense human resources, and we can just call upon the human spirit to come to the aid of a fellow human being, in this particular case a child,” said Robert Asencio, president of the Florida Public Employees Partnership.

    Gonzalez says there are enough of the $40 cans of formula to last Michael until the fall, just in time for his fourth birthday.

    In the meantime she is looking for donations, as well as other supplies of Neocate Junior to keep her son alive and healthy for as long as possible. Click here for more information.

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