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Tireless efforts help child with rare disease feel normal

The drug that helps to keep a five-year-old girl alive has a terrible side effect. It causes a chemical reaction that makes her smell almost like rotten fish.
Even with a rare disease, Maren Stecken enjoys kindergarten thanks to her mother's tireless effort to help her be normal.

A five-year-old Colorado girl who suffered a dramatic and smelly side effect from a drug to curb her rare metabolic disorder is thriving thanks to years of tireless work by her mother.

Shortly after Maren Stecken's birth, her mother Honey got a phone call from the hospital asking her to bring Maren in. Genetic testing revealed Maren had a rare metabolic disease.

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

Honey says only one out of every 100,000 babies are born with this condition which did not allow Maren's body to break down certain proteins which could cause her organs to shut down.

Many kids die from this condition.

With treatment and a strict diet, Maren can attend school due in large part to a prescription that stabilizes her bodily functions. But just being here is beating the odds.

"It's kinda like, 'Wow. I can see. I can picture my kid. She's gonna go to school, and you're very excited.' But then there's this," Honey said.

The medicine causes a chemical reaction in Maren's body leaving her with a problem that’s beyond unpleasant and very serious.

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

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

"What's gonna happen in first grade, in fifth grade or you know at prom or anywhere? It doesn't matter," said Honey.

After years of frustration, Honey finally found the answer on a web page promoting a product for feminine hygiene. It prevents the chemical reactions which cause the odors.

She couldn't believe how well it worked. Now, Maren's scent is just like any other kid's and to see her now, you wouldn’t know what she had been through, which is how it should be when you’re in kindergarten.

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