Child diagnosed with PKU - KWWL - Eastern Iowa Breaking News, Weather, Closings

Child diagnosed with PKU

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At two months old, an eastern Iowa girl has been diagnosed with a disease she will battle for the rest of her life.

Lilith Cummings has PKU.

It's a complicated disease that affects one in nearly 12,000 newborns every year.

PKU essentially means the body cannot break down an amino acid found in protein, affecting growth and learning.

Treatment includes cutting out protein and sticking to a strict diet, which sounds much easier than it is.

Lilith looks like any other baby.

However, through Iowa Newborn Screening, which has been around for years, she was diagnosed with PKU.

The disease can affect development.

Every month, Lilith's parents, James and Allison, travel to Iowa City to learn more about her prescribed diet, while also learning ways to ensure healthy growth.

"Every time we go, we speak to the dietitian and the doctor, and they tell us a little more. It's just a giant learning curve," Allison Cummings said.

Allison said since so few children are diagnosed with PKU, it's sometimes difficult finding people or parents who can relate.

"It can be frustrating, but I'm just focused on her. I'm not worried about much else. I just want to keep track of how she's doing, and what she does. Her pediatrician has only seen three other people (with PKU) in her 32 years of being a pediatrician," Allison said.

Another hook, Lilith's dad is a butcher.

"He feels a little upset when he goes to work sometimes, because he'll sit there and realize his daughter can never have any of this," Allison said.

Allison said she's able to regulate young Lilith's diet as an infant, but she's already starting to worry about how harmful foods will affect her later in life.

"The school will have to accommodate her diet. It's the law, but when kids have birthday parties in class, I'll have to know ahead of time, because I'll have to prepare her own little snack, because she can't have regular whole wheat or white flour," Allison said.

Doctors say if a child has PKU, and they don't follow a strict low-protein diet, it can lead to seizures, intellectual disabilities, and behavior problems.

There's treatment, but there is no official cure.

Their nurse practitioner said people living with PKU can lead long and healthy lives, as long as they eat right.

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