Teen With Rare Genetic Condition Receives Life-Changing Communication Device

LECLAIRE, Iowa (KWQC) — Imagine not being able to communicate the many thoughts in your mind. This is the reality of an Iowa teenager with Rett syndrome.

Thanks to a nationwide contest, she now has a way to communicate with friends and family, KWQC reported.

Students and staff cheered on Leah Layton at the Pleasant Valley Junior High library as she received her life-changing gift.

Leah was born with a rare neurological and developmental disorder, caused by a genetic mutation.

For about the first two years of her life, she developed normally; walk, talk, use hands freely.

“And then it’s as if the switch had been turned on. And Rett syndrome takes away the ability to speak, to use his hands. It gives her breathing issues and seizures and a whole host of other things that have made it pretty difficult over the, you know, about 13 years of her life,” said Ryan Layton, Leah’s father.

She understands everything but is unable to communicate verbally.

Her speech therapist, Jeanna Kakavas, was at an Augmentative Alternative Communication conference earlier this year and entered a contest to win a communication device through Forbes AAC.

The Ohio-based company manufactures and designs speech-generating devices for people who cannot speak.

The contest was simple: take a photo, get the most likes on Facebook and win a communication device for someone who needs it.

“We won the fixture by, like, a home side. So we got 705 likes I think and the closest person was like 190. So everyone in the whole community and LeClaire and the PV school district kind of helped earn that look for her” , Kakavas said.

“What Leah is going to do is have a vocabulary layout with her words that she would like to say. And then she can look at the icons and with eye-tracking technology she can make a selection on the screen,” said Clayton Smeltz, president and CEO of Forbes AAC.

Technology finally gives Leah her voice.

“When you can only answer ‘yes’ or ‘no’ and you’re dependent on other people asking the right question or thinking the same as you, you’re pretty limited. So that opens up a whole new world to just be her own person and give us her own thoughts, ideas, jokes and whatever she wants to tell us,” said Maren Layton, Leah’s mother.

“I’m literally like, so excited for her because she’s going to be able to connect with us and talk to us. I have good health with her, and she will be able to include herself in the conversations we have. It’s so exciting,” said Grace Law, Leah’s lifelong friend.

The excitement can be seen through Leah’s smile.

“She’s a happy girl but that was an extra smile. It was amazing,” Ryan Layton said.

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