Grovetown family raises awareness for 5-year-old son’s ultra-rare chromosomal disorder

GROVETOWN, Ga (WJBF)- A local family is bringing awareness to a new and ultra-rare disorder affecting their young son. It’s called CHAMP1. It’s a chromosomal mutation that was only discovered 11 years ago in 2015.

CHAMP1 is so rare that it only affects about 200 people in the world.

5-year-old- Charlie Thompson of Grovetown is one of those people. His father, Derek Thompson, said that throughout his wife Ashley’s pregnancy, everything seemed fine.

“But when he was born, we knew something right away was wrong because he was having trouble breathing. He didn’t really have a good cry like some babies do when they’re born… the respiratory therapist, they kind of knew something was wrong.”…

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