“One of my dreams is just to take Norah and get ice cream with her,” Eddie Kasprzyk said. “Just be able to enjoy a slice of pizza. Just to be a kid.”
Most of us put very little thought into the food we eat, but one local family has to think about every bite their little girl takes. A lot of foods could leave her with brain damage.
Two-year-old Norah Kasprzyk has a rare metabolic disorder called Phenylketonuria, which means she doesn’t have the liver enzyme needed to process phenylalanine, an amino acid found in protein. Phenylalanine can build to toxic levels in the central nervous systems of people with PKU, leading to mental retardation and other disorders.
Norah Kasprzyk was diagnosed with PKU when she was just days old after the results of the standard heel prick test every newborn gets came back abnormal. Norah was the only baby born with PKU in Western New York in 2014, her mother, Staci, told News 4.
PKU affects about 1 in 10,000 infants born in the United States, and can only be managed through an extremely strict diet and frequent blood tests. “She’s on seven grams of proteins for the day,” Staci Kazprzyk explained. “You have to pre-plan your entire day of eating.”
MORE | Click here to learn more about how you can help find a cure and raise awareness about PKU
Read More at: wivb.com