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SOUTH JORDAN — Eating is a life or death proposition for three siblings in South Jordan who suffer from a rare white blood cell disease.
"You need food to survive. But it is also what can kill you in our house," said their mother, Jenny Frisk. Nothing is normal for the Frisk family. All three children have spent weeks in the hospital, and they know they'll be there again. Each of them is allergic to pets, pollens and multiple foods.
One sip of the wrong milk could mean a trip to the ER or an extended stay here in Primary Children's Hospital. Dinnertime and bedtime are not normal either. Dinner does not include much food for the kids. Bedtime is just a continuation of dinner.
Dinnertime for most people is five or 10 minutes, said their father, Gary Frisk. "For us, it takes two hours." That's how much time Gary and Jenny Frisk spend in the kitchen each evening and each morning. That's what it takes them to prepare bland formulas in feeding tubes, and injected medicines for their kids.
"There's not a kind of food that doesn't affect one of them," Jenny Frisk said. Nine-year-old Jaxen, 7-year-old Tieler and 4-year-old Boston all have eosinophilic gastrointestinal disorder, or EGID. They have 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.
Whenever they are exposed to their triggers, the children face the potential of an anaphylactic reaction, allergic symptoms throughout the body that could be fatal.
"What might be safe for one kid won't be safe for one or two others," said their mother.
The wrong foods and allergens can make them sick for weeks, or even kill them.
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"Tieler had one sip of milk when she was 1-year-old, and instantly started projectile vomiting and got hives all over her body," said her father. "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."
For the Frisks, it's just too dangerous. Jaxen has endured eight surgeries. Tieler has been through eight extended stays at Primary Children's Hospital. Their younger brother, Boston, has gone through four surgeries, with more to come.
"I don't know how they do it," Jenny said. "They are super resilient and brave, courageous kids."
Even worse, Gary Frisk battled cancer two years ago, and his wife suffered serious adrenal insufficiencies that forced her to have several surgeries. Those serious illnesses were not related to the EGID.
Medical bills have bankrupted the family twice. They've discovered they make too much to qualify for help, but don't make enough to pay for the medical needs of their kids. The Frisks expected they would own their own home by now and enjoy vacations that were not at the hospital. But those dreams are hard to envision for them. They need money for genetic testing that gives them an opportunity to find out more about what's going on medically with their children, so doctors can better treat the symptoms and help them monitor the triggers.
Friends and family are trying to help the Frisks raise money using a GoFundMe account and two fundraiser concerts in Salt Lake County this weekend. The money raised will help pay for the genetic testing and treatment. The Frisks believe that's one path to a better future for their kids.
"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.