One-year-old needs genetic tests to save life

PHOENIX - A Sedona mom has won a battle with her husband's health insurance to save her baby’s life.

Marin Pelletier’s 1-year-old daughter Kinsley needs genetic testing in order for doctors to figure out what’s wrong with her. 

Pelletier noticed that her child wasn’t developing at the right time. Kinsley wasn’t gaining weight, she couldn’t roll over or sit up, and her motor skills were where they were supposed to be.

“I didn’t think anything of it at first because children on my husband’s side of the family were small. But things never improved,” Pelletier said.

But when Kinsley’s health wasn’t improving, Pelletier started to take her daughter to see specialists.

Doctors believe her symptoms could be related to Mitochondrial Disease. It’s a disorder that prevents the body from using nutrients to function and develop. 

“It’s hard news to hear that you during has a genetic disorder and her life will never be the same,” said Pelletier.

There are so many different variations of mitochondrial disease, and genetic tests are needed to figure out the best plan of action.

Those tests could cost more than $50,000, tests that weren't covered by insurance until today.

Pelletier told ABC15 that the City of Sedona, where her husband works, has changed their entire insurance policy and the change is going to be retroactive.

The genetic testing will now be covered. Testing that Kinsley needed for an official diagnosis to get the treatment she needs.

The family had received $4,000 in donations and the Pelletiers say "thank  you" and that the money will be used to cover other costs associated with taking care of a child with needs.