CHARLOTTE, NC (WBTV) - This 6-year-old is a “daddy’s girl” who lives in Lincolnton and has a great name – Aurora Jayne.
She also lives with a syndrome with a name I bet you can’t pronounce: Helsmoortel VanDerAa.
People say ADNP Syndrome for short.
ADNP Syndrome basically means a mutated gene in Aurora Jayne's brain doesn’t create the protein she needs for proper development. In many ways the syndrome has characteristics of autism, which is what her family originally believed she had until last September.
“Over the last few years each of the #MollysKids stories have left me inspired and encouraged,” her mom Anna Gaddis wrote. “My girl lives with a rare genetic disorder and feeling like I’m not alone in this journey has helped keep me going.”
While Aurora is six, she has the thought process of a toddler, no older than three.
“She’s our first child,” Anna said. “We obviously thought she was perfect from head to toe. Her father and I didn’t realize how far behind she was. She didn’t walk until almost a year-and-a-half and didn’t start talking until after the age of three, with the help of speech therapy.”
Through obstacles, Anna says Aurora is a trooper.
“Our daily life might not be as smooth as others and I know there will be MANY more hurdles to jump,” Anna said. “But honestly, I wouldn’t have it any other way. Aurora has a million-dollar smile 90% of the time. What she ‘lacks’ developmentally she makes up for with personality.”
Aurora Jayne loves music and dancing. What makes her "the happiest in the whole world," Anna says, is her dad.
This fall, Aurora's father will deploy overseas with his National Guard unit. He'll be gone a year-and-a-half. Anna will be here at home with Aurora Jayne and her younger twin 2-year-old sisters.
“As hard as that will be on Aurora Jayne, the village built around us is incredible,” Anna said. “We are remaining positive. Between family, friends, teachers, therapists and our ADNP family group (whom we connected with on Facebook!) we have all we need. For a long time I felt lost, alone and misunderstood but it just took time, lots of patience and getting over the fear of reaching out.”
Basically, Anna is saying, no one is alone.
“This may not be the life I envisioned years ago, but I am a better person because of my daughter,” Anna said. “As much as she needs me, I need her more. I’m thankful for my ADNP Kid, and love reading about all the #MollysKids in our area.”
**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.