Great Falls teen fights rare condition - KTVQ.com | Q2 | Continuous News Coverage | Billings, MT

Great Falls teen fights rare condition

Posted: Feb 10, 2018 2:31 PM Updated:

A Great Falls family wants to raise awareness during Heart Awareness Month for a condition their son was diagnosed with at birth.

Matthew Wouters has CHARGE Syndrome. CHARGE is an acronym combining several birth defects involving the heart, ears, eyes, and nose, which are associated with the condition. It occurs once in eight to ten thousand births. 

“It’s very hard to see him struggle with it every day,” Dena Wouters, Matthew’s mother, said.

Despite his struggles, Remko and Dena Wouters said their son is perfect.

“He’s worth it. I wouldn’t change having him for anything,” Dena said.

The 14-year-old has had a tough life so far spending most of it in the hospital or in his wheelchair, but that doesn’t stop him from being a kid.

“We treat him like we do the rest of the kids," Remko said. "He gets in trouble just like the rest of the kids, we try to discipline him just like we do the other kids, and you know we’ll take toys from him,” Remko said.

His parents added that's how they wish others would treat Matthew.

“You'll ask a question and we’ll answer it and you’ll have a better understanding of what he’s got and how you can assist others or somebody else down the road or in the next encounter,” Remko said.

Dena said parents with special needs children, not just those with CHARGE Syndrome, shouldn’t be scared to reach out to others.

“People have a tendency to be more afraid than anything, but I think for families who do have a child like that, and it’s something that I still have to learn, don’t be afraid to ask for help,” Dena said.

But each day they face the reality that Matthew may pass away.

“Waking up not knowing if he’s going to be alive when you go into his room to check on him, or if he gets sick, if this cold or flu or allergies are going to take him," Dena said. "Or if he has an ER trip or basic surgery, if he’s going to make it through."

However, he’s already beat the odds in so many ways. Most children born with CHARGE don’t make it to see their second birthday and that’s what makes Matthew special.

“He’s made it through with God all the way through, because without him, he wouldn’t be here. We call him our blessing in disguise, our miracle," Dena said.

And in their eyes, he’ll always be the man.

“As many hospital stays as they’ve had, as many problems as they’ve got, and they’re still strong and they still fight, and they still love and they’re so smart," Dena said. "Yeah, they’re superheroes.”

Doctor Dennis Ruggerie, a Great Falls cardiologist at the Seattle Children’s Satellite Clinic, said the condition is so rare, a very busy pediatrician may never see a case throughout their entire career.

“It wouldn’t surprise me if there were single digit known cases with CHARGE Syndrome in Montana,” Ruggerie said.

According to the Wouters, they only know of three children, including Matthew, in Montana with CHARGE.

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