Zoey's Voice: Girl with rare disorder speaks for the first time

February 11, 2019 10:34 PM

It's a parent's wish come true. 

Amberlee and Jeremy Ellis have always wanted to hear their daughter's voice. They have been waiting for years.

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"We've been able to hear our daughter's voice for the very first time, which was amazing," Jeremy Ellis said. 


5 EYEWITNESS NEWS first reported on 3-year-old Zoey - who was born with a rare airway disorder called "CHAOS," or Congenital High Airway Obstruction Syndrome, which has sealed off her vocal cords - last fall. View the original report below:

Surgery May Finally Give Voice to Coon Rapids Girl Born with Damaged Vocal Cords


Three-year-old Zoey Ellis from Coon Rapids was born with a rare condition called CHAOS, which stands for "congenital high airway obstruction syndrome." Zoey's voicebox was fused shut, meaning she was unable to laugh, cry or even breath on her own.

Until now.

"Her first word was 'dada,' which really melted my heart.  It was just awesome hearing her go 'dada, dada, dada' over and over again. I was always thinking I'd never hear that," Jeremy said.

In November, Zoey went to Cincinnati Children's Hospital, one of the only places in the country where they specialize in a complicated airway reconstruction surgery.

Doctors there removed and repaired Zoey's block by cutting her windpipe, and then expanded it by using small pieces of her rib cartilage as a graft. 

In short: Zoey finally got her voice.



"Her vocal cords work, which is really remarkable because she is three-years-old and they have never been able to work in the past.  But the nerves and the muscles have always been there, and she's been able to keep enough tone there that now they are able to work," said Dr. Robert Tibesar, with Children's Minnesota.

Zoey's voice is slowly getting stronger and more confident. She is in speech therapy and learns new words every week. 

"Mama, dada love me," Zoey said in a raspy voice.

"It's so heartwarming. It's something I never thought I would hear, and I'm so thankful to hear it now," Zoey's mom, Amberlee said.

Zoey is being monitored every four-to-six weeks at Children's Minnesota in Minneapolis. She'll likely have at least one more surgery to pull some of her neck muscles together and close up the skin where she used to have a tracheal tube. 


This video was captured the day Zoey's trachea was removed:


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Credits

Ellen Galles

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