Parents fighting for cure for son's rare disease

A Manatee County boy is living with a rare disease, and his family is fighting to find a cure.

Connor Dzembo, 3, has a rare degenerative disease called Ataxia Telangiectasia, which is also known as A-T.  Dzembo looks like any other child, but in a few years, his parents say he won't be able to run at all.

The first signs of the progressive disease include slurred speech and a lack of balance. By the age of 10, most children with A-T will need a walker. Some of them will need wheelchairs.

"You wake up one day and it seems like they went from being a normal child to really having some severe symptoms," said Connor's mother, Samantha.

Only 500 cases of A-T have been documented across the country. Most people with the disease die in their 20s.

After their son was diagnosed with A-T, Dzembo and her husband, Nicholas, started the Wobbly Feet Foundation, which raises money for A-T research. The foundation also helps to pay non-reimbursable medical bills for other parents of children with A-T. So far the foundation has raised $30,000.

On Friday, the foundation is hosting its biggest fundraiser yet. All proceeds from food and drink sales from Music on Main in Lakewood Ranch will go toward the foundation.

"This is a great opportunity for us to bring awareness to the community for people who may not have heard of A-T as of yet," Samantha Dzembo said. "Connor will be there so everyone can meet him."

The Dzembos hope their son's fight is as inspiring to others as it is for them.

"It's that smiling face every morning and that smiling face at night that keeps us going and pushing to find a cure," Nicholas Dzembo said.