Nyack family on mission to help children with rare 'KAT6A' disease

A Nyack boy was born with one of the rarest diseases, and now his parents are on a mission to help families like theirs.

News 12 Staff

Oct 1, 2021, 12:25 AM

Updated 1,017 days ago

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A Nyack boy was born with one of the rarest diseases, and now his parents are on a mission to help families like theirs.
Peter Najm was born with KAT6A, a disease that impairs the development of the brain and central nervous system.
He was misdiagnosed with autism until he was 8.
His mom and dad say only 350 people around the world have been diagnosed with KAT6A, and doctors who treat it are just as rare.
To help find resources for their son and kids like him, they founded the KAT6A Foundation.
Their goal is to find other misdiagnosed patients and fund research.
"We need more children with the diagnosis so we can do more research, and you know, big universities can listen to us...drug companies will listen to us," says Peter's mother, Natacha Najm.
Those who would like to make a donation to their foundation, can do so here - https://kat6a.org/


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