Family Hopes to Give Back for Son Fighting Rare Disorder

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LINCOLN, Neb.-- At 10 years old, Damon Stuhmer has spent more than half his life in the hospital battling a rare disorder - Kleefstra Syndrome.

It included countless overnight stays and times when his parents, Jennifer and Ryan, didn't think he'd make it to the next day.

The syndrome affects his muscles, vision, growth, sight and even ability to breathe on his own.

But, instead of raising money to pay their own medical bills, they want to give back to those who helped get their son where he is today.

Specifically, the children's hospital in Omaha.

"If it wasn't for children's hospital," Jennifer said, "we would not be a family of three. So, that's why it means amazing things to us."

They're trying to raise $10,000 as part of a challenge from the hospital, along with four other families, to raise a total of $50,000.

They said the hospital saved their son's life multiple times, and cared for him after spending the first 15 months of his life in the hospital, weighing only a few pounds.

Their $1 million dollar life insurance policy was used up in three months, but they're now able to have his bills covered through Medicaid.

Tuesday, they used Aces Haus of Cuisine in Lincoln to host a special fundraiser, already having raised more than $5,000.

But, they also used the time to share Damon's story.

"Taking care of Damon is the same way as any parent takes care of their kid," Jennifer said, "it is their normal. So, this is our normal."

They said it is thanks to the hospital that Damon has made it to 10 years old. He even recently took his first steps with a walker.

Giving back is a debt they feel they have to help repay, so other kids with the odds stacked against them can do the impossible.

"The world doesn't start and stop with Damon," Jennifer said, "even though we think it does sometimes. We were taken care of, we want that same opportunity to be there for anyone else that may need it."

To learn more about Damon, or to learn more about donating, you can visit the Team Damon website listed in the side bar.