2-year-old needs $3M treatment for rare genetic disorder affecting fewer than 50 children

AUSTIN, Texas — A 2-year-old boy with an ultra-rare genetic condition is at the center of a grassroots campaign to raise $3 million for a treatment being developed specifically for him.

Everett, from Austin, TX, was diagnosed with a mutation in his HK1 gene just eight weeks after birth. The condition affects fewer than 50 children worldwide and has led to daily seizures, significant respiratory challenges and developmental delays.

His family initially thought Everett's stay in the NICU at Texas Children's Hospital would be short. Instead, he spent 143 days in the hospital, where he was diagnosed with the rare genetic condit...