Local Family Spread Awareness about Rare Condition

CHATTANOOGA, Tenn. (WDEF)- One family in Ringgold is taking the opportunity to educate their community on a rare condition that only affects an estimated one in every 100,000 newborns.

She’s  a tiny girl with a really big heart, and tonight she and her family are handing out a lot more than trick or treats.

“You wanna go trick or treating?” said Lisa Shook.

Four year old Layla Shook and her family are spreading awareness this Halloween by passing out rice crispy treats, with a picture of the toddler on the front, and her story on the back, which her mother Lisa cleverly nicknamed “Layla” treats.

“Look this has got her picture, and I want you to go home and read about her. She’s not scary okay?” said Shook.

“And the reason we give these out is because sometimes, um children have a hard time accepting others. So this is kinda how offering awareness to her syndrome and educate others about her syndrome. So you know me being able to get this cards out, these kids can take them home, the parents can read them to them if they can’t read. Um, and it just helps them to understand that it’s okay to be different. Um you know cause we’re all–we’re all different, and we’re just out to be kind to one another is what we need to do,” said Shook.

Layla was born in 2011 with a rare condition called Apert Syndrome, Cloverleaf Skull.

Layla’s syndrome affects her skull, face, hands feet and her airway, and at the tender age of just four years old she’s already been through 54 surgeries, with many more to come.

*Does she go to Ringgold Primary?

*She does go to Ringgold Primary! Have you seen her there?*

“I take her into the school systems, and I introduce Layla to the different kids. I’ve taken her to the high school, the elementary school and then a high school in Calhoun. Um, just to educate them and tell them about her syndrome, and um you know just, just kinda get them an idea of kids are different and it’s okay, because you know she’s going to be in the school system the rest of her life so I want them to be used to Layla. Don’t be afraid of Layla, you know, Layla could be your friend, you know and that’s what she will be…. Right?” said Shook.

Layla is scheduled to undergo a serious surgical procedure next Summer, in hopes to improve her breathing, and speech.