CMN MIRACLE CHILD: Ozarks boy the only one in the world with diagnosis

SPRINGFIELD, Mo. (KY3) - “I was expecting a completely healthy baby, they didn’t know anything was wrong,” said Kayla Burkholder of her pregnancy with her son.

Things were very different once Jaxson was delivered.

“His eyes wouldn’t open, he had a cleft palate. ... And he has six fingers on one hand, which we keep because it’s super cool. … And he failed his hearing test.”

Kayla talked about Jaxson’s diagnoses. “He’s the only one in the world with his diagnoses, so he was diagnosed with a 4Q deletion and 10Q duplication and there is no name for it.” Kayla went on to say she is hoping they can name it the “Jaxson Syndrome.” “They said no so far, I’m trying!”

There’s also a second diagnoses. “He also has a genetic heart condition that is called Hypertrophic Cardiomyopathy, so his heart is growing in thickness rapidly,” she explained. “That’s probably one of our biggest challenges so far and the most scary stage that we’re in right now.”

Unfortunately, there is nothing doctors can do. “We just trust the Lord, that’s all you really can do in times like that,” she said.

Kayla talked about her hopes for her son’s future. “I don’t want Jaxson’s life-legacy to be defeat,” she said. “I want it to be a story of triumph and victory, even if it doesn’t end the way that we want it to.” “Our goal for him primarily is he can live as normal, whatever definition that is, a life as we can give him,” said Jaxson’s dad Nathan Burkholder.

Both Kayla and Nathan said they’d be in a completely different situation, emotionally and financially, had it not been for Children’s Miracle Network Hospitals.

“They were like, ‘Oh just send us the bill and we’ll cover it,’ so with that help, we were trying to figure out our finances, but they just made it happen,” explained Nathan. “It was more for me a support and a family than it was that financial thing that I thought it was just going to be about,” said Kayla.

People may ask, ‘What’s it like having a kid that is the only one in the world with their diagnoses?’ Kayla said it’s a life of educating, fighting for what you believe in, and fighting for the answers. “I have fired a good handful of doctors,” she said.

“I feel like CMN has the perfect name to it because you see on TV the kids that they help and think, ‘Oh that’s so cute,’ but it’s so real!”

Miracle Week is celebrated during the first week of December. Those looking to donate can call 1-800-369-8169 or follow the link attached with this story to donate online.

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