Chesterton Tribune

 

 

Rett Syndrome girl Zoe, 11, touches hearts and changes lives

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By KEVIN NEVERS

Zoe Adams is 11 years old. She loves music. She’s got Bieber Fever bad. Her favorite color is purple. She could easily, and happily, spend the day on horseback.

And when she was 2 and 1/2, Zoe lost the ability--just lost it--to speak. One year later she lost the ability to use her hands.

Zoe is afflicted with Rett Syndrome, a kind of autism as medically prevalent as cystic fibrosis. Rett Syndrome is a progressive and incapacitating neurological disorder caused by a mutated protein, it affects some 500,000 girls--and only girls--worldwide, and every 90 minutes somewhere on the globe another baby girl is born with it.

In the ways which matter most, perhaps, Zoe is a perfectly normal little girl, of average intelligence, who reads, hears, and comprehends, who is eager to love and be loved. Yet essentially her mind is trapped inside her body, and as she grows older that body is likely to become increasingly frail.

On Saturday, at James O’Connor Martial Arts and Fitness at 534 Broadway in Chesterton, Zoe and her parents, Amy and Bryan Adams of LaPorte, talked to the O’Connor studio’s Leadership Team about Rett Syndrome, about autism--April is National Autism Awareness Month--and about the normalcy of the disabled.

“Rett Syndrome comes under the autism umbrella,” Amy told the Chesterton Tribune. “Zoe was born normal but at 16 months started regressing, at 2 and 1/2 she stopped talking, and at 3 1/2 all hand usage stopped and her continuous hand-wringing began. She’s had 10 and 1/2 years of physical therapy.”

Zoe’s Rett Syndrome was initially misdiagnosed. That happens a lot. In fact, the disorder was not formally identified until 1984. “Sometimes I think that there are old women with Rett Syndrome who have been institutionalized their whole life, undiagnosed or misdiagnosed, unable to talk, just trapped inside their bodies,” Amy said.

And the bodies of Rett girls are profoundly frail. Their immune systems are compromised, so they’re more susceptible to infection. Nearly 90 percent of Rett girls will eventually develop scoliosis. Yet Zoe is still one of the lucky ones. She can walk. Many of them can’t.

Amy is hopeful, however, that in Zoe’s lifetime researchers will develop a medical protocol to relieve the symptoms of Rett Syndrome. In 2011, researchers succeeded in reversing the symptoms in mice and the use of growth hormones in girls under the age of puberty has also proved efficacious.

In the meantime, Zoe is growing up. She’s able to communicate by means of a DynaVox, a device with a variety of messages--“I’m thirsty,” “Horseback riding”--to which Zoe can point to make her mind known. And the Adams have recently obtained an Eye Gaze peripheral which will allow Zoe to control the DynaVox with her eyes.

Zoe attends junior high school, she’s made friends, she’s touched hearts. “Zoe’s happy,” Amy said. “She’s outgoing. She has the attitude of a typical 11-year-old girl. She’s boy-crazy. She loves Justin Bieber. She goes horseback riding. Pontoon-boating. And she’s changed kids’ lives. She’s my only daughter and I was put on earth to be her mom.”

Autism Awareness Walkathon

At 10 a.m. the Autism Society of North Central Indiana will hold its ninth annual Autism Awareness Walkathon at the LaPorte County Fairgrounds. Walk registration begins at 8:45 a.m.

For information on Rett Syndrome, and on how to donate or volunteer, visit

www.girlpower2cure.org

The Leadership Team at James OConnor studio

By KEVIN NEVERS

For about a year, a select group of students at the James O’Connor Martial Arts studio at 534 Broadway in Chesterton has been learning how to give back to the community.

They are the members of the Leadership Team, about 30 of them, aged 8 to adult, not necessarily the best performers in the studio but the most committed ones, program director Tanya Smith told the Chesterton Tribune. “They’re super-dedicated to the sport and the community, they put in extra hours, they help around the school, and they’re required to put in service hours.”

“We feel like it’s important to give back to the community and to teach that to our students,” Smith said. “Our goal is to instill in them skills that they will carry on when they leave here, to become more productive members of society, to give them leadership skills to enable them to teach other leaders.”

Every month, the Leadership Team undertakes a special project. In February members fundraised for the American Heart Association, in December they assembled food baskets for needy families, in July they will be participating in Relay for Life.

And in April--National Autism Awareness Month--they sold window flowers at $1 a piece, with all funds going to Rett Syndrome research.

Tera Littlejohn, who runs the Leadership Team, took a novel approach to teaching its members about disability. “I started vacuuming and then tried talking to them,” she said. “The kids started saying ‘We can’t hear you.’ Then I asked right-handers to write with their left hand and left-handers with their right. It wasn’t easy for them. And then I had them put on blindfolds and asked them how many fingers I was holding up. And I told them ‘That’s how special-needs kids feel all the time.’”

“Our lesson is life-skills development,” Littlejohn said. “How we can befriend and interact with other kids with disabilities.”

James O’Connor Martial Arts currently counts 190 active students in 21 classes. Tae Kwon Do is the martial art taught at the studio but there is also a variety of fitness classes available, in Zumba, cardio, and yoga.

 

 

Posted 4/24/2013