Hanover Brothers' Rare Disease Doesn't Keep Spirits Down

MINNEAPOLIS (WCCO) - It's hockey night at the Walesch household in Hanover.

And as usual the MVPs are 9-year-old Brett Walesch and his brother, 7-year-old Luke.

"Brett tends to be our more quiet, soft-hearted kid," their mother, Katie, said.

"Luke is almost completely the opposite -- he's a ham," said their father, Chad.

They may have opposite personalities, but the brothers are fighting the same fight.

You'd never know it by looking at them, but both boys are battling a serious disease that could someday lead to kidney failure.

"It tends to affect the kidneys and the eyes the most," said Katie.

It's called Cystinosis, and the symptoms began for Brett when he was two years old.

"He'd be playing, and he'd throw up," said Katie. "He'd be lying in bed in the middle of the night and he'd throw up."

Doctors at Children's Hospital diagnosed Brett. When Luke was born, he was also tested, and the results showed he had it, too.

In order to live normal lives, Chad and Katie give their sons medication around the clock. It starts at midnight, then 3:00 a.m., and different times throughout the day. It's all administered through a G-tube.

"We could essentially buy a car every year with what our medical expenses are," said Katie.

They family has spent more than $91,000 out-of-pocket on medications since 2007, and it's likely both boys will someday need kidney transplants.

But with a serious battle, comes serious support.

"I can't ask for more people who are supporting us mentally, physically, emotionally, financially," Katie said. "We couldn't do it without them."

"It's unbelievable the support we get," Chad said. "Our parents help us out. It's like she said, if we didn't have their support, one of us wouldn't work."

Fewer than 500 kids in the U.S. have what Brett and Luke have, and the Walesches work hard to keep their minds on hockey and not their health.

"Ultimately we are trying to help them lead a quote-on-quote normal life because they can," said Katie. "Because that's what we strive for."

The Walesches say they do not qualify for medical assistance.

Wells Fargo collects money for the family through the Brett and Luke Walesch Benefit Fund (you don't need an account number). You can also help by visiting their YouCaring page.