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South Jordan family battling rare diseases hopes to raise awareness

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Posted at 9:32 PM, Jul 05, 2016
and last updated 2016-07-06 10:24:34-04

SALT LAKE CITY -- Getting sick isn’t fun for anyone, but watching your kids get sick may be even harder.

For the Frisk family, with three kids battling a rare disease, it’s just part of life.

"You don't envision your children being sick and having to watch your children go through things that are hard and painful,” said mother Jenny Frisk.

Her kids Jaxen, 11, Tieler, 9, and Boston, 6, all have a class of illnesses known as EGID’s.  Every child experiences different symptoms and triggers, but all experience severe allergies.

"Tieler has 37 food allergies and 14 anaphylactic allergies,” Jenny Frisk.

For Tieler and Jaxen, the allergies are so severe they are fed primarily through feeding tubes. The family mixes up formula every day and packs it into backpacks the kids carry to school.

The Frisks say the formula alone cost $60,000 a year.

On top of that, medical costs, doctor visits, emergency room trips, co-pays has resulted in two medical bankruptcies, despite their father working up to 120 hours per week.

"I did our taxes I'm like, I made $100,000 babe. I check the bank account, it was five cents,” said father Gary Frisk.

There is no easy answer. With each new doctor visit, sometimes there are only more questions.

"They still have a lot going on that we haven't been able to figure out and that's why their doctor's consider them partially undiagnosed,” Jenny Frisk said.

The family is sharing their story to raise awareness for others dealing with rare diseases.  They hope more people will visit and support http://www.utahrare.org. Despite the long years of genetic tests, endoscopies and other lab tests, the Frisks say the kids are happy. They have a family bond, sharing their struggle together, all with one goal.

"You can get healthy and big and strong,” said 9-year-old Tieler.

You can help the Frisk family at https://www.gofundme.com/FriskFamily