HAILEY, Idaho (KMVT/KSVT) — A Hailey family is asking the community for help finding a bone marrow donor for their daughter, Charlie Everson, who was diagnosed with a rare immune disorder in 2022.
Kate Everson said she first noticed something was wrong with Charlie at just 5 months of age. Charlie was officially diagnosed at age 4 with STAT1 gain-of-function, a genetic disorder in which immune cells are over-activated, according to the Immune Deficiency Foundation. Fewer than 500 cases have been documented worldwide.
In Charlie’s case, her immune system has turned on her own body. Kate Everson said the disorder caused Charlie’s immune system to attack her digestive system, preventing her from absorbing food and growing properly.
“Her immune system was attacking her digestive system so she wasn’t growing,” Kate Everson said. “Anything she ate, she wasn’t absorbing, and it’s really important to grow as a kid. One of her medications suppresses her immune system, and so it stops attacking things it shouldn’t be attacking.”
Charlie has received weekly infusions to reduce inflammation and support her growth. Those treatments have helped for years, but her family said she now needs a bone marrow transplant.
The Sun Valley Ski Education Foundation and the Wood River Community YMCA are hosting a bone marrow donor drive to help find a match for Charlie.
“I don’t like to ask for help and this is something that we can’t do by ourselves,” Kate Everson said.
Potential donors can sign up online, receive a kit at home, complete a cheek swab and return it by mail. In-person testing will also be available at the drive.
Hailey community is hosting a bone marrow donor drive for local girl with rare immune disorder.(Galena Graphics | Kate Everson)
“You can sign up online and get the kit at home and do the swab and send it back in the mail, or you can show up to one of the drives that we have and test on site,” Kate Everson said.
The donor drive is scheduled for Tuesday, Feb. 24, from 8:30 a.m. to noon at the YMCA in Ketchum.
If a match is found, Charlie and her mother will relocate for at least five months to a year for treatment at Seattle Children’s Hospital.
Charlie’s brother, Bennett Everson, described his sister’s role in the family.
“Whenever I’m feeling sad, or I need something, or I’m just in a bad mood, she’s always there,” Bennett Everson said. “She’s always open to try new things and try what I like, and I think that’s what makes her a really good sibling.”
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