Three Siblings Battling Rare Disease

Lisa Skrezec News Leave a Comment

I recently came across this article while browsing the news, it talks about three siblings (Jaxen, Tieler and Boston) that are all battling a rare white blood cell disease that makes food deadly. Each is allergic to pets, pollens and multiple foods, and has spent weeks at a time in the hospital — and they know they’ll be back sooner than later. For a typical family, dinnertime is 10-15 minutes, but for the Frisk family it takes upwards of two hours — that’s how long it takes 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. This whole story breaks my heart. 7 year old Tieler had a sip of milk when she was one year old, and instantly started projectile vomiting and broke out in hives all over her body. Eating literally becomes a life and death situation. I cannot imagine being a child and having to watch every single thing I put in my mouth, when at that age you try to eat any and everything!

It’s scary to think that the wrong foods and allergens can make them sick for weeks — or even kill them. Collectively the children have been through 12 surgeries and 8 extended stays at their children’s hospital. Not only do they suffer from eosinophilic gastrointestinal disorder (EGID), but all three have asthma, eczema, and other aerodigestive conditions.

“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,” said Jenny Frisk. It’s stories like this that hit us hard, and make us work harder to provide the best solution possible. Before today I had never heard of EGID, I hope to educate myself on this disease and see how we can get involved with an organization to help spread awareness on this condition.

Try to watch the video without tearing up…

If the Frisk’s story has touched your heart the way it has touched mine, head over to their Go Fund Me page and help out with their medical bills.

You can read the full article here.

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