CHARLOTTE, NC (WBTV) - Good morning to the newest one of our #MollysKids... 12-year-old Adyson Haynes.
"My niece lights up everyone around her," said her aunt Amberly Little. "She is my everyday reminder of the beauty in life."
Adyson is a 6th grader at Conover School in Newton who battles a genetic mutation known as KIF1A. The condition mimics cerebral palsy. She's mostly wheelchair-bound, requires constant care and has a limited vocabulary. For anyone paying really close attention, they'll remember this is the same thing Emily Cook lives with, one of our kids in Shelby.
(Coincidentally, I plan on writing an update on Emily and her battle with KIF1A tomorrow for "Rare Disease Day".)
"Adyson tries to learn a new word every day," says Aunt Amberly. "She's thrilled when she gets one. She is the happiest girl you'll ever meet."
Two months ago, Adyson was diagnosed with scoliosis and underwent surgery at Levine Children's Hospital. Amberly says she "took it like a champ," and now has several rods placed in her back to help keep it straight. She continues to recover nicely and just yesterday morning was doing donuts in her wheelchair in her living room.
"Her parents, Zena and Stephen, both know I'm writing you," Amberly said. "So do her stepparents, Leslie and Catherine. We all are wanting her story to be public so we can share her warmth with the world."
It's not often I hear from aunts or uncles. Out of courtesy to the family of any one of our #MollysKids, all information has to come from a parent or guardian… that assures what's being relayed is something the family wants public. But Aunt Amberly's email struck a chord because she is clearly in awe of her niece.
"Adyson is a bright spot in this world," she said. "I wanted to share her story because we need bright spots. We know there are very few people who have ever heard of KIF1A. We thought at first it was a death sentence for our niece. Thankful to know it's not, but it does come with its own challenges that Ady handles with grace and ease."
Amberly ended her email with one line.
"Simply put, Ady is my hero."
We're thrilled to meet you, Adyson. Welcome to #MollysKids.