Susan

Susan Wright died Wednesday, claimed by Friedreich's Ataxia. She was 18.

Gizmo lies on the back of a rich brown suede couch, manning a post for which he has assumed responsibility for four-plus years.

But the silky terrier’s ears aren’t perked and his hopes don’t appear to be that high — he stares intently out the front window, as if trying to direct the familiar, yellow school bus his way through sheer force of will.

But Gizmo’s efforts are in vain and his sad, liquid eyes show he knows it — his Susan isn’t coming home.

Susan Wright died Tuesday, claimed by Friedreich’s Ataxia, a disease that robbed her ability to walk, feed herself and, toward the end, even speak clearly. But the disease never had a hold on her spirit.

“The biggest thing in my mind is that no matter what Susan was going through, she was always smiling, always thankful … and always concerned for others,” said David Thomas, pastor of Providence Baptist, the church Susan attended. “She taught us all how to live. She was an inspiration.”

Thomas recalled the 18-year-old’s playful side.

“Sometimes I’d be preaching and I would look down at her ... and she would smile and stick her tongue out and try to make me forget what I was saying,” he laughed.

Susan was diagnosed at 4 years old, and, at the time of the diagnosis, was among the youngest patients to show symptoms. Doctors told her parents Friedreich’s Ataxia most often appears between the ages of 8 and 15, and can even rear its ugly head as late as 20.

The disease is unusual, afflicting only one out of every 100,000 people in the United States.

In order for a child to fall prey to Friedreich’s Ataxia, both parents must carry the same, recessive gene.

The disease is one of the central nervous system, attacking nerve tissue along the spinal cord and the nerves along the arms and legs.

Susan’s symptoms first manifested in stumbling and loss of coordination. The last time she walked was in 1995, when she proudly marched down the aisle at her uncle Marc Rudder’s wedding. She wanted so badly to make it down that aisle, scattering flowers before her soon-to-be Aunt Heather’s feet, said her mother Dawn Kilby.

And Susan approached her goal, as always, with determination — walking resolutely to a waiting chair, from which she beamed throughout the rest of the ceremony.

After that she was confined to a wheelchair, slowly losing control over her body, but never her mind.

“Had she not been affected by this disease, she was so intelligent, she could have done anything she wanted to do,” Dawn said.

Susan’s grandfather, Ernest Rudder, agreed.

“She was like a sponge,” he said. “She soaked everything up.”

Susan was set to graduate South Laurel High School this year, a milestone she anticipated.

She particularly looked forward to drawing disability so she could move out on her own — hiring a nurse’s assistant to see to her day-to-day needs — and start college life.

Last week she deposited her first disability check, and though she didn’t feel well, went out with her mother to spend some of her own money for the first time. She bought movies.

Her hobbies included watching “The Price is Right” and playing videogames, among which “The Sims” and a karaoke game were her favorites. Though she wasn’t able to actually hold the game controller, she roped in willing family members — most often her grandmother Judy Rudder — to wield the controller while she gave instructions.

“My mother is excellent at video games now,” Dawn smiled.

She campaigned hard for her great-uncle Troy Rudder’s successful mayoral bid, even affixing his political signs to her wheelchair. She displayed the colorful signs proudly until the Atlantic Ocean washed them away during a family vacation in Florida. And yes, she had asked to be wheeled directly into the warm, rushing water.

A notorious animal lover, Susan repeatedly reminded her great-uncle that when he took office, she wanted the city to establish a “doggie day care.” Gizmo was her inspiration, she declared while graciously offering to manage the entire operation.

She attended South High’s prom last year, wearing a stunning royal blue dress of her own choosing, complete with a V-neck and stripes of rhinestones. Her sister Lyndsey Wright meticulously applied Susan’s makeup and curled her hair — the entire look was capped off by sparkly jewelry and shoes.

“She was looking forward to going again this year,” Dawn said.

Susan loved school, and, until the disease stifled her speech and sapped her strength, sang in the choir. She also liked to perform solos at church.

She attended classes three days a week with the help of personal assistant Donna Disney, who, among other things, scribed Susan’s notes, fed her and helped her through physical therapy. Susan was so enthusiastic about school that in middle school she was presented with what was equivalent to an 110 percent award.

Every time she went to school, Gizmo would maintain a vigil, Donna said, leaping up and dashing outside at the sound of the bus. As soon as the doors whooshed open, Gizmo was inside like a shot, plopping himself on Susan’s lap and waiting for the ride down the wheelchair ramp.

“He was very, very protective of her,” said Susan’s stepfather Frank Kilby. “He slept with her every night, and he would come and get us if she was sick.”

Susan’s health deteriorated over the last six months, culminating in a final trip to the University of Kentucky Medical Center on Sunday. Gizmo accompanied her to the hospital and stayed beside his mistress until the end.

“She was one of the most loving, caring people I’ve ever met,” Dawn said. “She didn’t see bad in anybody ... and was always very faithful. She was very strong, very strong-willed. I don’t think any of us would ever have been as strong as her.”

Susan leaves behind a large loving family, including her grandparents, mother and stepfather, sister, brother John Douglas Wright, and stepbrothers Ryan and Aaron Kilby.

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