October 07, 2018 10:26 PM
Two Minnesota parents are on a mission to find their daughter's voice.
Three-year-old Zoey Ellis was born with a rare airway disorder called "CHAOS," or Congenital High Airway Obstruction Syndrome, which has sealed off her vocal cords.
"It would just be amazing to hear her voice. I've never heard her cry. I've never heard anything other than the two sounds she can make without air," Zoey's mom Amberlee Parkin said.
Dr. Robert Tibesar with Children's Minnesota said they only see a case like Zoey's every five to 10 years. In fact, they had to implant a tracheostomy tube into her windpipe before she was even born.
"She's got a thick web of cartilage and soft tissue that just never opened up," said Tibesar.
"That means there is no communication between her mouth, her throat and her windpipe."
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Even though Zoey's voice box is fused shut, that doesn't stop her. She knows sign language and she has developed a way to communicate with her parents by squeaking and clicking her tongue.
But having a way to communicate is not the same as having a voice. Zoey's parents want her to have both.
"I think the hardest part is when you hear other kids talking or crying or singing or laughing. She sees them doing it, and you wonder what is going through her head because she knows she can't," said Zoey's dad, Jeremy Ellis.
"The thought of hearing her speak... I have high hopes," said Parkin.
Those high hopes are taking the family to Cincinnati Children's Hospital in Ohio. It's one of the only places in the country where they specialize in a type of complex airway reconstruction surgery that would remove and repair Zoey's blockage. Surgeons will cut her windpipe, then widen it by using small pieces of cartilage from Zoey's ribcage as a graft.
Zoey was evaluated over the summer and is scheduled for surgery in November.
For now, it's the best chance there is at giving Zoey a voice, and finally hearing some of those words they have been waiting for.
"I hope she'll say 'mama!' or 'mommy,' that's my dream," said Parkin
Updated: October 07, 2018 10:26 PM
Created: September 25, 2018 12:11 PM
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