Two-year-old Hutchinson girl battles rare genetic disorder

? At first glance, she’s a miniature Orphan Annie.

Bright red hair in ringlets frame Aubrie Dixon’s face. Soft blue eyes add a gentle sweetness.

But a closer look says more.

Her elfin-like appearance and oversized mouth are the immediate visible signs of Williams syndrome, a rare genetic disorder that manifests in both physical and mental disabilities.

In the innocence of her childhood, pausing to look up occasionally as naptime neared on a recent afternoon, Aubrie dropped colored plastic balls into a game, quietly retrieved them and started over again.

Now 2 years old, she’s been slow in learning to talk.

“She doesn’t know any different, this is the way she’s always been,” Aubrie’s mother, Jennifer Dixon said.

Beneath her dark purple play dress, Aubrie’s right rib cage – twisted and rotated outward – extends toward her spine. The narrowing vessels in her heart signal her congenital heart disease, and she faces a life of mild to moderate mental retardation.

Aubrie Dixon, 2, of Hutchinson, suffers from Williams syndrome, a rare genetic disorder that causes physical and mental disabilities. She will begin a phase of medical treatment this week in Kansas City, Mo.

Her next medical appointment is set for Thursday when Aubrie will check into Children’s Mercy Hospital in Kansas City, Mo. She’ll be placed in a halo traction for two weeks in preparation for insertion of a rod that will be attached to her spine. Depending on her rate of growth, she’ll return every four to six months, up to age 13, for rod extensions, in an effort to keep her spine as straight as possible.

A condition that affects 1 in 20,000 children, Williams syndrome compares in some ways to Down syndrome, Jennifer Dixon said. Williams Syndrome children are able to describe an animal such as a horse in detail but unable to draw it. A Downs syndrome child can draw the animal but can’t describe it.

The Dixons’ pastor, the Rev. Harold Nelson, and his wife, Jenise, of New Hope Baptist Church, were with Jennifer and Randy Dixon in Kansas City during a first back surgery. They’ll return for the Oct. 31 rod surgery, he said.

“She’s a sweet girl, and it’s a sweet family,” the Rev. Nelson said. “We’ve tried to educate ourselves and the church so we can understand.”

A heart murmur, detected by their family doctor when Aubrie was 2 days old, was the alert that something wasn’t right, Jennifer Dixon said. Aubrie has two older sisters, Amber Walters, 11, and LuAnn Dixon, 8.

“It was a good pregnancy, nothing was wrong,” she said.

Jennifer Dixon had planned to return to her job as a Reno County Home Health Aide, but because of the multitude of medical appointments and her daughter’s need for one-on-one care, that’s been impossible.

“I’m going to push her to do the most she can, achieve whatever she wants so she can not say ‘I can’t do,”‘ Jennifer Dixon said.

Right now she loves balls and books.

The Dixon family has health insurance on an 80/20 plan through the job of her husband, Richard, but the expenses for Aubrie’s medical care and the added travel have created an enormous financial burden.

At the same time they say they’re blessed to have Aubrie.

“She brings sunshine to a cloudy day and she’s taught us a lot of lessons in her young life,” Jennifer Dixon said.