5K for boy with rare disease

Carter Rosenberg, five-year-old boy living with a rare disease.

HOLLAND, Mich. (WOOD) — There will be a 5K race held for a West Michigan boy who suffers from a rare disease Friday evening.

Five-year-old Carter Rosenberg is a preschooler in Zeeland who is living with Eosinophilic Esophagitis, referred to as EE. It’s an inflammatory condition that makes it nearly impossible to eat solid foods.

Carter Rosenberg dressed up as Batman.
Carter Rosenberg dressed up as Batman.

“It causes swelling and inflammation of his esophagus. It causes him to gag, vomit, and causes chest pain,” said Kellie Rosenberg, Carter’s mother.

The family found out about EE when Carter was starting to eat solid foods at about a year old.

Carter Rosenberg
Carter Rosenberg and his mother, Kellie

“We noticed from the beginning that there’s just something not right and we went through a number of tests, tons of different specialists, and finally, they put a camera into the stomach and found that he had EE,” said Kellie.

When Carter was four years old, he had a gastric tube placed into his stomach.

“He receives a lot of his nutrition through the tube with a medical formula. He has a pump that leads to tubing that also has some medical formula in a backpack. We put the backpack on his back and the tube goes to the front of his body where he has a button that leads to his tummy,” said Kellie, “Beyond that, he does safely eat rice, pears, bananas, and blueberries.”

Kellie Rosenberg told 24 Hour News 8 that it’s been a journey for the whole family.

Rosenberg family
Rosenberg family

“I think that when I found out the diagnosis, I had no idea of the enormity of how much it would affect our lives as a whole. He can’t have birthday cake, he can’t have ice cream trips with the family, he can’t have pizza. All of those things are limitations for him and for us,” said Kellie.

Carter's Kool-Aid for a Cure (2013) The family decided to host a 5K race to raise money for the Cured Foundation, which is an organization dedicated to raise funds for research for a cure for EE.

Registration for the event is available starting at 4 p.m. at Ridge Point Church in Holland where the race will take place. The church is located on 104th Avenue.

The event starts with a Kids Fun Run 1K race at 6 p.m. that will cost 20 dollars. The 5K race starts at 6:30 p.m. and will cost 30 dollars to participate.

Last year, the family had a Kool-Aid stand to generate funds and raised five thousand dollars. This year, the family hopes to raise ten thousand dollars.

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