For three young siblings, eating is a life or death proposition, thanks to a rare white blood cell disease, reported KSL.
The Frisk children— Jaxen, age 9; Tieler, age 7; Boston, age 4— have spent weeks in the hospital and are allergic to pets, pollens and multiple foods. The siblings all have eosinophilic gastrointestinal disorder (EGID), an abnormal build-up of eosinophil white blood cells in their GI tracts that can cause inflammation and tissue damage in response to foods and allergens. While the disease is relatively rare, it has increased in prevalence over the past decade affecting one in 2,000 people, according to the American Partnership for Eosinophilic Disorders.
"You need food to survive. But it is also what can kill you in our house," their mother, Jenny Frisk, told KSL.
When they’re exposed to their triggers, the children could have an anaphylactic reaction— potentially fatal allergic symptoms throughout the body.
"Tieler had one sip of milk when she was 1-year-old, and instantly started projectile vomiting and got hives all over her body," her father, Gary, told KSL. "It's a life and death situation at birthday parties, or religious events, or anywhere we go, because food is such a big part of our culture."
Between the three children, they’ve endured 11 surgeries and eight extended hospital stays, with more expected in the future.
On top of the children’s health issues, Gary battled cancer two years ago and Jenny had to have several surgeries due to serious adrenal insufficiencies that were unrelated to EGID.
The family has been bankrupted twice by medical bills. While they make too much income to qualify for help, they don’t make enough to pay for their children’s medical needs. Friends and family have started a GoFundMe account to raise money to pay for genetic testing and treatment.
"When we're looking at an illness that is not curable, and the treatment isn't covered (by insurance), the light at the end of the tunnel is really far away," Jenny said.