Fundraiser set for Nassau boy with rare disease

Posted: Updated:
LOCUST VALLEY -

A community garage sale in Bayville Saturday will raise money for a Locust Valley boy who is dealing with a rare disease.

Cavan McGovern, 9, has a rare mitochondrial disease known as Kearns Sayre syndrome. It has severely impaired his growth, eyesight and hearing. He cannot produce enough energy to maintain basic everyday functions.

"He would fall out of his chair because he didn’t have the core strength to hold his body up," says Loretta McGovern. "This past year his eyes began to droop. They call it ptosis, to the point where he couldn't see and he had to lean his head back."

VIDEO: Interview with mother of boy with rare mitochondrial disease

There is no cure and over time it will affect every organ in his body.

The progressive disease is uncommon and underfunded, so his parents put together the Cavan McGovern Family Research Fund to raise awareness.

“Hopefully we can get a cure before things deteriorate,” says Dave McGovern.

The website has many ways for people to help and donate to the cause.

The community garage sale will take place at St. Gertrude’s in Bayville from 9 a.m.-2 p.m. Saturday.

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