Like many other little girls her age, eight-year-old Ashlyn Rogers Lanier loves to swim, use electronics, go to school and socialize with her friends.  She wakes up happy every morning, and those around her can’t help but notice how her smile lights up a room. However, unlike most other children, Ashlyn has Angelman Syndrome, a very rare genetic neurological disorder that affects approximately one in 15,000 people around the world. 

Something Wasn’t Right

Seven years ago, Sissy Rogers Freeman welcomed two-year old Ashlyn into her home as a foster child. At first she assumed Ashlyn was barely more than a year old, because the little girl couldn’t sit up on her own. But it wasn’t long before Freeman, an exceptional children teacher assistant at Winnabow’s Town Creek Elementary, realized that something was wrong.

“I’ve been working with special needs children for twenty years, so I can spot when milestones are being missed. I just knew something wasn’t right,” says Freeman.

Luckily for Freeman, the pediatrician she took Ashlyn to see had previously interned at an Angelman clinic. His familiarity with the syndrome caused him to suspect the little girl might have the rare disorder. After Ashlyn was tested, the family learned that Ashlyn had tested positive for Angelman.

A Rare Disease

Named after English physician Dr. Harry Angelman, Angelman syndrome specifically affects a gene located on chromosome 15. Characteristics of Angelman syndrome include developmental delays, lack of speech, seizures, and an extremely happy, excitable demeanor.  It is often misdiagnosed as cerebral palsy or autism due to similar symptoms and a lack of awareness.

“It’s so rare that a lot of doctors don’t even know about it, and testing for it is extremely complicated,” says Freeman. “Ashlyn is the only ‘Angel’ within three counties of here. So the more awareness we can bring to Angelman syndrome, the quicker we can get help for kids that are misdiagnosed.”

Freeman officially adopted Ashlyn when she was four years old, and the two have been a unbreakable pair ever since. Because Ashlyn loves her mom to go to school with her every day, Freeman boards the bus each morning with her daughter and rides it to Town Creek Elementary.

“She always greets her peers with a wave and a smile. Even though she’s nonverbal, she’s very vocal and tries hard to talk,” says Freeman. “She just loves being around other kids.”

Ashlyn’s Special Needs

Because of her susceptibility to seizures, Ashlyn must have someone with her at all times. She spends most of her school day learning life skills in a self-contained classroom. Freeman says, however, that despite her physical limitations, Ashlyn and other ‘Angels’ are much smarter than many might think.

“Just because children with Angelman can’t talk, cognitively they’re still high functioning. They can do things you wouldn’t believe,” says Freeman. “Ashlyn can operate electronics like nobody’s business, but always on her own terms.”

Freeman has made it her mission to help spread awareness about her daughter’s disorder, including organizing a yearly campaign for International Angelman Day (February 15^th). Because of its genetic relationship to autism and other disorders, many researchers believe a cure for Angelman syndrome will lead to cures for similar disorders.

Freeman knows that in order to help find a cure, it’s imperative more people learn about Angelman syndrome first.

“If we can make Angelman syndrome as well known as Autism and Down syndrome, we can get the resources we need for research and treatment,” says Freeman. “With the right resources, there’s really no limit to what these ‘Angels’ can do. Just because they may have a diagnosis, don’t count them out. When you provide a child with the opportunity to do things, you’d be very surprised at what they can achieve!”

For more information about Angelman syndrome and ways you can help, visit https://cureangelman.org.

This family is just one of the amazing people you’ll find in the Wilmington, NC region.  Read about some of our other featured events in the Cape Fear area. We focus on the festivals and events in the Cape Fear area that are great for the whole family.  Have fun exploring and let us know what you find!