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Family of LaGrange toddler with rare skeletal disorder raising awareness on condition

Published: Jul. 23, 2021 at 5:19 PM EDT|Updated: Jul. 23, 2021 at 7:57 PM EDT
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LOUISVILLE, Ky. (WAVE) - Many inspiring stories are shared during the Olympics about people overcoming adversity. A little girl from LaGrange is doing the same, and her family is choosing to educate others on differences to bring people together.

When Ashley Henderson was pregnant, she wasn’t expecting a call from the genetic counselor saying her unborn child had a disorder called Apert Syndrome.

“(He said) ‘One of your tests came back positive for Apert Syndrome,’” she said. “And I was like, ‘What? How do you spell that?’ You know? He basically started saying things like sunken mid-face, bulging eyes, fused fingers, fused toes, skulls fused. Yeah, I was freaking out.”

By this time, Ashley Henderson and her husband Connor had already seen ultrasound pictures of their baby.

“I think abortion is offered, and that is something we never considered,” Ashley Henderson said.

The Hendersons welcomed their daughter Hailie into the world two years ago. Her tiny fingers and toes were fused together into a shape resembling rosebuds.

“They look very different from everyone else, and that really scared me, especially her being a girl,” Connor Henderson said.

Instead of staying private, the Hendersons have done the opposite. During Hailie’s surgeries and hospital stays, they document the good and bad moments on the Hope for Hailie Facebook page to spread awareness of Apert Syndrome.

“We love sharing her story,” Connor Henderson said.

While it’s changing other’s perspectives, it’s changed their outlook on life. They appreciate all the small things.

“Like just having functional fingers is something we all take for granted,” Ashley Henderson said, “she couldn’t even hold your hand or hold anything.”

A recent surgery means 2-year-old Hailie Henderson now has fingers.

“Fortunately, we were able to get five fingers on each hand,” her mother said.

The Hendersons said their doctors believe Hailie is approximately 8 months old in terms of her development.

Liam, the Hendersons’ oldest child, is 6 years old, but the couple wanted their daughter to have a sibling closer to her age. In spite of Hailie’s ongoing therapies, doctor’s visits, and hospital stays, they managed to have a third child; Owen is now 3 months old.

“Maybe some peer pressure will get her to do more things,” Ashley Henderson said with a smile.

This family said they are learning more about Apert Syndrome each day, and in doing so, still dreaming of all that’s possible for their daughter.

“I’d say the same as any father and daughter — I want her to have a happy life,” Connor Henderson said.

Apert Syndrome individuals typically live a normal life span.

Thanks to the Hope for Hailie Facebook page, the Henderson’s have been able to connect with other families facing the same journey. To follow them, click here.

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