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Dec 10, 2012 1:53 PM by Elizabeth Hill

Abbeville girl suffers from rare genetic disorder

The list of things three-year-old Ella can't eat is long.

"She can never have meat, never have seafood, never have dairy," says mom Stefanie Bergeron.

Ella suffers from a rare genetic disorder called Phenylketonuria or PKU. Her body can't process the amino acid Phenylalanine- or Phe- found in protein rich foods. Over time a buildup of Phe can lead to irreversible brain damage. This means Ella and her mom have to be very careful how much protein she eats.

"Probably about 2-3 grams of protein a day."

To put that in perspective, the USDA recommends 13 grams of protein for children Ella's age.

Despite being just three year's old, Bergeron says Ella knows what she can and cannot eat.

"She'll say oh no I can't have that, no thank you."

Ella eats primarily fruits and vegetables, but thanks to specially made low-protein food, its not the only thing she can have.

"Special pizza for her, special cheese, special bread, special things so she can have what you and I would eat so she's not left out."

As long as she sticks to the diet Ella will grow up strong and healthy.

In addition to adhering to this strict low-protein diet, Ella drinks a special medical formula and gets a blood test every month to test her levels of Phe.

Every newborn baby is tested for PKU and it affects approximately 1 in 15,000 children. There is no cure for PKU.



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