More than $1M raised for Sandpoint boy with rare disease

KREM 2's Taylor Viydo tells the story of Henry Sturgis, who has an extremely rare and incurable disease that affects just 2,000 people across the world. (3/16/17)

SANDPOINT, Idaho – A 10-year-old boy from North Idaho has a rare and incurable disease that affects just 2,000 people across the world.

To help fund research to find a cure, Henry Sturgis’ family started a skiing fundraiser at Schweitzer 8 years ago.

"When he was 16 months old, he started to fall off the growth charts," said his father Brian.

For no reason, Henry's growth was being affected. His parents would later learn that Henry had what's called cystinosis. It's a rare genetic disease that causes an amino acid to build up in the body's cells. Over time, that acid slowly destroys the kidneys, liver, and muscles among other organs. There are just 500 cases in the U.S. and 2,000 cases across the world. Sadly, there is no cure.

"Currently, Henry takes 45 pills a day. Plus he's supposed to take hourly eye drops," said Brian.

At one point, Henry had to take one of his medicines every six hours on the dot with no exceptions. New, advanced medications are hard to come by since the disease is so rare. So, that lead the Sturgis family to want to do some fundraising to support research.

"Hank lives with us 24 hours a day. There's no resting. What can we do for 24 hours," Brian explained.

The idea morphed into what's now called 24 Hours for Hank. For 24 hours straight, teams from across the Inland Northwest ski Schweitzer. During that, they compete in games and competitions and fundraise. This will be the 9th year that Schweitzer has hosted 24 Hours for Hank and hundreds are expected to attend.

"It's overwhelming. The amount of support the Sandpoint community pours in to our event, and Spokane and CDA Also. It's amazing," said Brian.

By the end of this year's event, 24 Hours for Hank will have raised over $1 million to support cystinosis research. The Sturgis family said they are already seeing change. The drug Henry had to take every six hours has been improved and now he only takes it twice a day.

24 Hours for Hank will take place on March 24th. Registration to ski and compete is still open. Click here if you would like to make a donation. 

© 2017 KREM-TV


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