Children Suffering from Rare Disease Unable to Eat Protein

News

Being a kid usually means eating like a kid. Things like pizza, cake and ice cream.

But for two children in Holladay, they can only eat fruits and vegetables. 

That’s because they have a very rare disease called phenylketonuria, or PKU, which means the children cannot eat protein.

“It’s a metabolic disease where you can’t eat protein,” says 9-year-old Claire Oliver, who was diagnosed with PKU when she was just eight days old.

PKU is extremely rare, affecting 1 in every 15,000 births. That’s about 20,000 cases per year.

“No meat, no fish, no legumes, no grains, no dairy,” says Amy Oliver, mother of Claire and 6-year-old Seth, who also has PKU. “It’s mostly fruits and vegetables that they can eat so it is very restricted.”

For Oliver, her hardest time as a mother came when Claire was diagnosed.

“I would describe it as shock because you don’t expect to get a phone call that there’s something wrong when your baby looks perfectly healthy,” says Oliver.

People with PKU are unable to process the amino acids found in protein.

“If a child or adult with PKU were to eat a normal diet, then those extra amino acids would build up in their system and they would interfere with brain development and function,” says Oliver.
 
There’s no cure, and the only treatment is strict diet regulation.
 
Talking to Seth and Claire, they actually enjoy their diet.
 
“My favorites are corn, peas and broccoli,” says Claire.
 
“I like broccoli [too],” says Seth.
 
Claire and Seth are both healthy, but they often miss out on things other kids enjoy.
 
“In the public school it’s a very difficult time when a classmate brings in chocolate cupcakes for their birthday because that’s not something that my kids can eat,” says Oliver.
 
May is PKU awareness month.
 
“It’s really nice to raise awareness of the condition so that people can be more sensitive to food issues,” says Oliver.
 
Claire and Seth are both involved in a clinical trial for a new drug to treat PKU.
 
Since they’ve been taking it, they’ve been allowed to eat small amounts of protein.

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