SIOUX FALLS, S.D. (KELO) — The latest figures from health organizations show around one in 15 children are born with a rare disease. Scientists have now identified around ten thousand rare diseases, each affecting fewer than 200,000 people.
Thanks for signing up!
Watch for us in your inbox.
Subscribe Now
7-year-old Connor and 4-year-old Eli both have Phenylketonuria, also known as PKU. It’s one of the rare diseases now screened at birth in all 50 states. PKU is an inherited disorder that causes the amino acid phenylalanine to build up in the body. Left untreated, it can cause brain damage.
Because of that, the boys have to limit the amount of protein they eat.
“PKU is like when you can’t have certain foods that other people can have,” said Conner.
“Yeah, when you have PKU, you can’t have meat,” said Eli.
“Meat or chicken or ham or anything with meat inside,” added Connor
Connor’s favorite food is Pizza, and Eli prefers cooked broccoli. So I suggested a pizza with cooked broccoli