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5-year-old with rare metabolic disorder can now live a more normal life

By Nelson Garcia • KUSA Denver | Feb 28th, 2018

The fact that a 5-year-old girl is attending kindergarten at the school in Creede sounds normal. But, in the case of Maren Stecken, it's something rare.

"It could make you very, very, very sick and very rare," Maren said.

When Maren was born, her mother Honey Stecken says things appeared fine.

"Got a phone call about two weeks after she was born," Honey said. "They wanted us to bring her the very next day to Children's."

The Stecken family lives in South Fork, Colorado about a four-hour drive south of Denver nestled in the San Juan Mountains. Genetic testing revealed that Maren had a rare metabolic disease.

"The moment those words came out, propionic acidemia, I mean, it was the worst case scenario," Honey said.

She says one out of every 100,000 babies is born with this condition which does not allow Maren's body to break down certain proteins. This could cause a buildup of propionic acid in her system which could cause neurological damage and start shutting down her organs.

"So, the median lifespan is five," Honey said.

Up until recently, Honey said Maren could only eat a specialized metabolic formula, but now doctors are allowing her to attend school under a strict diet. But, the key, Honey says, is a supplement called L-Carnitine which reduces the buildup of propionic acid.

"It keeps her safe, but it also makes her smell really bad," Honey said.

While it may sound funny, Honey says this became a serious problem especially when Maren would sweat. In high doses, the chemical reactions involving L-Carnitine release an odor.

"It almost smells like rotten fish," Honey said. "My little girl is walking around smelling so bad that people do not want to be around her."

Honey tried everything from soaps to lotions to body sprays. She says nothing worked to mask the smell. Maren struggled in preschool.

"What's going to happen in first grade, in fifth grade, or you know at prom anywhere? It doesn't matter," Honey said. It's kind of like wow, I can picture my kid. She's going to go to school and you're very excited, but there's this."

After years of frustration, Honey found the web page of a new cream called Lume. This product is designed to block the chemical reactions which cause odor according to inventor Dr. Shannon Klingman.

"I actually used the science behind these metabolic conditions to solve an odor issue for women as a gynecologist," Klingman said.

Klingman traveled to Colorado to meet Maren after she heard how it addressed her scent issue. She says she was moved to know that her discovery led to solutions she did not intend when creating Lume.

"I feel as if when someone says what was the value of your life other than my four children, it's this project for me," Klingman said. "It's that meaningful. I think that my mark on the world will be this."

Now, Maren can attend school and not have to worry about unusual social issues with other kids. Isaac Grody-Patinkin is the Prevention Services Coordinator for the Silver Thread Health District. He works with the schools and students to accept and understand the needs of students like Maren.

"We're small enough so that we can have a really deep understanding of each individual student that's here," Grody-Patinkin said. "Maren just happens to have a genetic disorder. What does Maren need to thrive?"

Honey cannot believe how well the cream is working to eliminate the fishy smell while opening up Maren's world in school.

"Like all those images in my mind of not being asked to prom or maybe not having friends," Honey said. "All of that just kind of you know just kind of fell away."

Grody-Patinkin says Maren is adjusting very well.

"There was no way unless I was told the story of Maren that I would know she was different than any other kid," Grody-Patinkin said.

Maren still has to live and manage a rare metabolic disorder that can kill her. But, Honey says she can still live the life of a normal kid with something very rare.

"For my daughter, that smell was like the big, it was that wall," Honey said. "It was what was keeping her from really just living as normal as can be."

Maren can stick to thinking about what makes school fun for a 5-year-old girl.

"That my teachers are nice and all the kids are nice," Maren said.

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