Nada Hassanein

Democrat staff writer

Little Kason Williams was a happy, energetic child. But after only eight months of being in the world, his health took a downturn.

"It was becoming so bad — he was just sick and lifeless. He didn't want to do anything but just lay on you, and that's not our baby," said Savannah Hall, Kason's mother.

The fragile 11-month-old son of former Seminole running back Karlos Williams was recently diagnosed with a rare disease, Hirschsprung's.

Because of missing nerve cells in the child's colon muscles, in the past few months, he's suffered from a swollen stomach, severe digestive problems, fatigue and lots of sleepless nights.

An estimated one in 5,000 babies born in the U.S. is diagnosed with the disease, according to tracking and research by the Minnesota Department of Health. The disorder is congenital — but in Kason's case, it wasn't diagnosed until he was 10 months old.

"It's been tough being the parent — a young parent, at that ... it's kind of tough watching your baby struggle to do simple things such as going to the bathroom," Karlos Williams said.

Kason underwent his first surgery Monday at Jacksonville's Wolfson Children's Hospital, where he was flown to be seen by a pediatric gastroenterologist.

When he arrived in Jacksonville, his stomach was 57 centimeters round. His colon was the size of a softball, which is extremely large, Hall said, for an infant. There, little Kason had a three-hour-long surgery to place a temporary colostomy bag.

"It is heartbreaking..." Hall said, to watch her child endure so much. "It's awful to see your baby in pain like that."

It took an hour and a half and three different nurses to put an IV in his small, dehydrated veins. She could not watch as Kason had a feeding tube inserted.

The procedure, normally done in one surgery, was split into two to avoid complications; Kason will need another surgery to remove the dead intestines in a few months, Hall said.

A family member started a GoFundMe fundraiser for the family. As of Tuesday, they have raised $2,235 toward a $10,000 goal. Funds would help toward expenses not covered by insurance, Hall said, and for food, gas and hotel costs for her parents.

Reach Nada Hassanein at nhassanein@tallahassee.com or on Twitter @nhassanein_.