#MollysKids: Welcome Abigail Perrone, from Bessemer City

CHARLOTTE, N.C. (WBTV) - Abigail Perrone is a 12-year-old at Gaston Virtual Academy. She lives in Bessemer City with her mom, Ashley, stepdad, Eric, and her five brothers and sisters. (“We’re a blended family,” said her mom. “We are big and love big.”)

We’re introducing Abigail this morning, as the newest one of our amazing #MollysKids. She’s a sixth grader who lives with a mitochondrial disease that went undiagnosed until age four. Though on paper her medical situation seems dire, her mom says when you meet her in person, all that melts away.

“She has never met a stranger,” Ashley said. “You’ll fall in love immediately.”

Ashley said that shortly after Abigail was born, she knew something was different.

“Her eyes were slightly crossed and she kept her neck at an angle,” Ashley said. “Since 4 months old, I had her in various therapies. All her crawling, rolling over, walking…. all those things were delayed. After months--actually years--of testing, blood work, and hospital trips, her geneticist was finally able to give us a legit diagnosis of a mitochondrial disease called Autosomal Dominant Optic Atrophy [ADOA].”

Ashley said when Abigail was diagnosed, her daughter was the seventh in the world to get this news. She had to learn exactly what ADOA was, and its impacts on her daughter.

“There’s a lot this diagnosis means,” Ashley said. “There’s a 50/50 chance Abigail can go deaf, and though she walked 15 steps one day back in 2014, Abigail will not walk ever again. We’ve almost lost her multiple times, which is also hard to say. And everything got worse after Abigail was in a medically-induced coma for a week in 2015. Doctors told me when she woke up, things might not ever be the same. They were right. Abigail fought to speak, eat, sit up, and crawl. So much has changed over the years and though she isn’t the same little girl she used to be… I can tell you for right now… Abigail is thriving the best she can.”

Abigail Perrone walking(Hibbler family photo)

Ashley said Abigail is “happy” and “sassy” and “confident in who she is.”

“She is so funny and silly,” Ashley said. “Her wit will make you throw your head back and laugh.”

As for Abigail’s prognosis, Ashley said she’s not sure.

“Some mornings she sleeps in so well I am afraid to go check on her,” she said. “She could have more seizures or strokes; I just don’t know. I don’t know her prognosis and am just told that ‘her story will be shorter than most.’ I wasn’t sure we’d get to spend her 10th birthday in person, but we did, and I know, I just know, that every single day is a miracle we get to have with our Abbz.”

But Ashley said she wants to be clear: Abigail hasn’t had a major scary medical occurrence in a few years, and she considers that a blessing.

“I want to tell you all the great things about Abigail, too!” her mom said. “Her stepdad, Eric Hibbler, is in the process of adopting both her and her little brother. We are excited for the process to be complete. There’s lots of love in our house and a few of Abigail’s favorite things are the card game UNO, cupcakes, donuts, her dogs (she baby talks to them), and audiobooks we get at the public library. She also loves swimming at her Gigi’s pool or in South Mountain, being outside on warm days, ‘Nature Cat’ and ‘Arthur’ TV shows (both on PBS), science lessons, and she’s now learning how to transfer in and out of her wheelchair independently and is very proud of herself for that.”

Ashley said she doesn’t want to hurt any feelings, but Abigail’s favorite person is her great-grandma, Gigi.

“We’re also excited because we were recently gifted a HandiVan,” Ashley said. “This will make it easier for us to take Abigail on more adventures. SeaWorld was one of our big goals, and now with the van that’ll be more comfortable.”

Welcome to #MollysKids, Abbz. (Love that: “Abbz.”) Please encourage your mom and your “big, loving family” to keep us all updated.

- Molly