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Giving voice to Kylie

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Family seeks surgery to help deaf tot talk, hear

By Cindy Simpson

Kylie Hurst smiles at the two girls at the playground, using American Sign Language to say “baby girl.”
Her grandmother, Kim Ezell, sees this often as the 2-year-old, who has been deaf since birth, enthusiastically approaches children who do not know what to make of her silence.

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“She’ll run up to these children and she’ll move that mouth 90 miles per hour and nothing will come out. They just look at her and walk off. It is sad, because she doesn’t realize they can’t hear her,” Kim Ezell said.
“We want her to have that opportunity to speak and opportunity to hear.”
The family, including Kylie’s mother Anikka, are anxious for Kylie to be able to hear and to be able to communicate verbally. They are striving to have an auditory brain stem implant, which is a surgical implanted electronic device that helps provide a sense of sound to a profoundly deaf person.
“We are just so ready to hear that little voice,” Kim Ezell said.
“We love her just the way she is, because that is how God made her, but we want her to have this opportunity and speak.”
Kylie gingerly holds her grandfather, Tim Ezell’s hand, tugging him toward the water at Roane County Park, signing both the words for water and bird, as she points at ducks and geese. All too soon she gets what she really wants, her feet in the water with her grandmother muddying her boots to join her.
“She is Miss Personality. She lets you know what she wants, how she wants it and when she wants it. She’s very loving. She’s very active, and she’s very outgoing,” Kim Ezell said.
Tim Ezell admits she’s a grandpa’s girl, even watching fishing shows with him.
What might Kylie will first hear?
“I don’t really care what it is as long as she hears. God has been good to us and opened a lot of doors,” Kim Ezell said.
She explains that she was calling around finding resources for sign language when she was told about the surgery.
In the United States the surgery was previously only approved for adults, according to Kim Ezell, but now there is a trial  of auditory brain stem implants for children.
The first child, Grayson Clamp, 3, received the transplant in May.
The surgery has been performed on children in Italy for some time.
Kylie was born with one cochlear nerve damaged and another completely missing.
Because of this, Kim Ezell said doctors have said this surgery, which bypasses the area where there is no nerve, is the only option for Kylie.
Because her only health issues are her hearing, she’s an excellent candidate to be one of the children who has the surgery during this limited trial.
Kim Ezell said children between 2-5 are selected. It’s an age when language really blossoms.
“They are thinking when they do a younger age, it is going to help them,” said Kim Ezell.
The procedure costs $88,000.
The family will make payments on that and is seeking help to meet those costs as well as the cost of traveling to and from the surgery site: either in Massachusetts, North Carolina or California.
“One way or another, we are not going to miss this window, because if we miss this window Kylie may not have another chance like this,” Kim Ezell said.
Donations can be made by mail at 615 River Road, Kingston TN 37763 or by visiting www.gofundme.com/38ff70.