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11-year-old with rare genetic mutation learns to communicate with treatments at West Texas Rehab

Published: Jan. 19, 2022 at 6:49 PM CST
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ABILENE, Texas. (KSWO) - An 11-year-old girl who lives with a rare genetic mutation is learning to communicate, with treatments from staff at West Texas Rehab in Abilene.

“Keeping up her strength and motion will really help continue to have her participate in daily activities, which is the biggest thing.”

Doctors diagnosed Aviva with Rett syndrome when she was still a baby.

It’s a rare neurological and developmental disorder that affects the way the brain develops.

“The journey with her has been long, challenging, but it’s worth it,” said Avivas’s mother Rebecca Anderson.

It causes loss of motor skills and speech and primarily is seen in girls.

“When she was diagnosed, from that time to now, it was always an up-and-down, trying to learn how her attitudes, her body movement because she is non-verbal, she is wheelchair bound, learning how to help her communicate is a lot harder,” Anderson said.

Symptoms vary, but include everything from cognitive disabilities to irregular sleep patterns, both of which Aviva lives with.

“She does have tremors, she has seizures, she has anxiety, all of it that makes her, in other words, anxious,” Anderson said.

Luckily, Aviva’s family discovered West Texas Rehab, which provides occupational, physical and speech therapy in three locations to adults and children.

A couple times a week, she and her mother spend time with therapists who are resolved to help Aviva communicate, using treatments to keep her bones and muscles aligned.

“The stronger she is, the less risk that she has for scolioscis for surgeries.”

Anderson and Aviva’s 12-year-old brother are her champions, making sure she knows the crowd behind her is rooting for her.

“It’s going to be a fight for her for the rest of her life of trying to make sure she’s at 100% to be determined. If she sees everybody else determind, then she will be determined,” Anderson said. “That’s part of Rhett syndrome. It fights against that X chromosome and it deteriorates it.”

To help patients like Aviva with rare disorders, West Texas Rehab uses donation funds to provide doctors and therapists with more education.

“We have the best clinicians,” West Texas Rehabilitation Center President and CEO Steve Martin said. “We have a very liberal continuing ed budget, so that we can send them to get specially certifications that maybe only a few patients a year need that, but we’ve got somebody on staff to handle that treatment at that time.”

Even though there’s no cure for Rett syndrome right now, Anderson feels confident that the staff at West Texas Rehab can help Aviva live life to the fullest.

“The ladies here are amazing. I won’t go anywhere else. They connect with her. They adjust with her, just she like adjusts. If she pushes them, they push back,” Anderson said. “It’s a communication that they both understand and I’m very thankful for it.”

To find out how you can help patients like Aviva, you can visit westtexasrehab.org.

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