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 condition.
“He can’t hold up his head; he’s not walking, crawling, running, but I believe someday he will,” Everett’s mother, Marissa Blomstrom, said.

Now, Blomstrom is working to raise money for a customized treatment being developed by Rare Labs, a division of AlphaRose Therapeutics.
The treatment is an Antisense Oligonucleotide, or ASO, known as an “N of 1” drug. That means it is specifically tailored for Everett rather than being a generic treatment.
The treatment is projected to cost around $3 million and take two years to develop.
So far, the family has raised approximately $50,000 through its grassroots campaign, “A Cure for Everett.”
Blomstrom said she hopes awareness and contributions will continue to grow as the family works toward its $3 million goal. She also emphasized the urgency of the effort, noting that half of the children with Everett’s mutation haven’t lived to see their eighth birthday.
“Every birthday is special for a lot of reasons, but especially for Everett,” she said, as he approaches his second birthday next week.
Everett is currently being treated by Dr. Carla Thompson with Austin Regional Clinic.
The family is seeking donations, which are tax-deductible because “A Cure for Everett” is associated with the 501(c)(3) nonprofit Rare Village Foundation.
Anyone who wants to support Everett’s journey can visit acureforeverett.org or his GoFundMe page for more information and to make donations.