Kiel boy with rare disease will need expensive treatments for life. Here's how you can help.

Patti Zarling, Manitowoc Herald Times Reporter
Updated ·4 min read
Tucker Krause, 10, of Kiel, Wis., suffers from a rare immunodeficiency disease the keeps his body from fighting infections.
Tucker Krause, 10, of Kiel, Wis., suffers from a rare immunodeficiency disease the keeps his body from fighting infections.

KIEL — Tucker Krause is very excited. He soon will join the other men in the family at the annual November deer camp, now that he’s 10 and old enough.

His mom, Michelle, is excited for him — but scared, too.

Tucker has a rare disorder, common variable immunodeficiency (or CVID), which causes his body to have low levels of the proteins that help fight infections or other foreign or abnormal cells that invade or attack it.

“I want Tucker to be a normal little boy, and he’s been waiting his whole life to go to deer camp,” Michelle said. “But I’m also so worried he could catch something with all those people in close quarters.”

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Being and feeling sick is a daily part of little Tucker’s life.

Because of his CVID, Tucker was hospitalized five times before he turned 3. He had adenoids removed at age 1 and again at age 8, and his tonsils removed by the time he was 4. He’s had countless ear and sinus infections.

He also coughs frequently and doesn’t have the energy a boy who loves the outdoors as much as Tucker does should have.

Tucker finally was correctly diagnosed with CVID in late July, his mom said.

“I took him to his doctor for a wellness check, and the doctor said, ‘We can’t do that, this kid is not well,’” Michelle said. “It’s summer and the kid is sick all summer. Something is wrong.”

She’s glad for the diagnosis, but said there’s still a long road to follow.

Tucker Krause, 10, of Kiel, Wis., suffers from a rare immunodeficiency disease the keeps his body from fighting infections.
Tucker Krause, 10, of Kiel, Wis., suffers from a rare immunodeficiency disease the keeps his body from fighting infections.

The disease is chronic, and there is no cure. Tucker was started on a new medication given through drip infusions about five weeks ago. He’ll have to do these expensive treatments once a week for the rest of his life, Michelle said.

To help pay for the treatments, as well as cover past medical bills, Michelle’s brother, John Salm, started a GoFundMe page for his nephew.

“If you’ve ever wondered where plasma donations go, this is one place,” Salm wrote on the GoFundMe page intro. “It takes 130 plasma donations to produce one vial of medication for him.

“The financial burden and stress this is putting on my sister and her husband is rough and I fear it will only worsen,” he continued. “My research found some adults will skip weeks of treating themselves because of the cost. This takes a toll on their bodies, not to mention is dangerous. I don’t want my sister and her husband to ever have to be in the situation where they are unable to purchase Tucker’s medication.”

As of Tuesday afternoon, the fund had raised $3,745 of the $10,000 request.

A family friend who owns The Mental Health Emporium in Chilton also created a special candle for Tucker, who picked out the scent and helped design the label. The friend is donating $10 for every candle sold to Tucker’s cause.

You can find the candles at https://thementalhealthemporium.com/our-products/ols/all?sortOption=descend_by_created_at.

Tucker’s uncle said he hopes people will donate to help a kid who is a helper himself.

Each year, Tucker sets up a lemonade stand and donates the proceeds to New Hope, a center for people with disabilities in Chilton. The clients put the funds toward their annual vacation. Last year, they rented a golf cart with the money. That’s just one example of Tucker's generosity, his mom said.

“He’s always the kid that wants to give back,” Michelle said.

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Tucker is a fifth-grader at Kiel Middle School. The family lives on their hobby farm outside of Kiel, and Tucker, who has three older siblings ages 23, 21 and 19, loves the outdoors.

“His passion is hunting and fishing,” Michelle said. “He’s been bowhunting since he was 3. He knows how to bait his own hooks for fishing. Any chance he gets, he wants to be outside.”

Tucker has his ups and downs as he navigates his illness.

“We’re kind of going day to day,” Michelle said. “He’s been a trooper.”

Contact reporter Patti Zarling at pzarling@gannett.com. Follow her on Twitter @PGPattiZarling.

This article originally appeared on Manitowoc Herald Times Reporter: GoFundMe launched for Kiel, Wisconsin, boy Tucker Krause who has CVID