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KMBC 9: Children's Mercy helps diagnose brothers' mystery illness

By Donna Pittman

Children's Mercy Hospital helped solve a mystery a family in Bolivar, Missouri, had lived with for years.

"It's just like living in the dark. You don't know what's happening, where you're going to go. No future. It's hard to have a plan," said Kaden Isenberger, 18.

"You know something is wrong with your child but you can't explain it," said Casie Isenberger, Kaden's mother.

Labs showed kidney, liver and heart issues. But there was no diagnosis, except for the certainly that something was wrong and rare.

"Unfortunately, only about 30% of those families know the cause of their disease in their kid," said Dr. Tomi Pastinen.

Enter Children's Mercy's Genomic Answers for Kids. It sort of like a data depot for rare diseases.

"We're collecting higher depth of genetic data than any project to date in the world, actually from these rare disease families, and to help the global research community and rare disease community reporting this data available to other researchers," Pastinen said.

Kaden and his brother, Ty, found theirs in MFN2, which is a condition that affects fat storage. They're two of five people in the United States who have been diagnosed.

"There is light even if we don't get the medicine. We know what to do in order to help ourselves," Kaden Isenberger said.


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