ABILENE, Texas. (KSWO) – An 11-year-old girl who lives with a rare genetic mutation is learning to communicate, thanks to treatment from staff at West Texas Rehab in Abilene.
“Keeping her strength and moving will really help keep her involved in daily activities, which is the most important thing.”
Doctors diagnosed Aviva with Rett syndrome when she was just a baby.
It is a rare neurological and developmental disorder that affects brain development.
“It’s been a long and difficult journey with her, but it’s been worth it,” said Rebecca Anderson, Avivas’ mother.
It causes loss of motor skills and speech and is mainly seen in girls.
“When she was diagnosed, from then on, it was always up and down, trying to learn how her attitudes, her body movements because she’s non-verbal, she’s in a wheelchair, learning how to help her communicate is a lot harder,” Anderson said.
Symptoms vary, but include everything from cognitive impairment to irregular sleep patterns, which Aviva lives with.
“She’s got tremors, she’s got seizures, she’s got anxiety, it all makes her, in other words, anxious,” Anderson said.
Luckily, Aviva’s family discovered West Texas Rehab, which offers occupational therapy, physical therapy, and speech therapy in three locations for adults and children.
Twice a week, she and her mother spend time with therapists who are committed to helping Aviva communicate, using treatments to keep her bones and muscles aligned.
“The stronger she is, the lower her risk of scoliosis 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 struggle for her for the rest of her life trying to make sure she’s 100 per cent to be determined. If she sees everyone determined, then she will be determined,” Anderson said. “It’s part of the Rhett syndrome. It fights against this X chromosome and deteriorates it.
To help patients like Aviva with rare diseases, West Texas Rehab uses donation funds to provide doctors and therapists with more in-depth training.
“We have the best clinicians,” said Steve Martin, president and CEO of the West Texas Rehabilitation Center. “We have a very liberal continuing education budget, so we can send them out to get special certifications that only a few patients a year might need, but we have someone on staff to handle that treatment at this time.”
Although there is currently no cure for Rett Syndrome, Anderson is 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 fit with her, she just likes to fit. If she pushes them, they push back,” Anderson said. “It’s a communication that they both understand and I’m very grateful for that.”
To find out how you can help patients like Aviva, you can visit westtexasrehab.org.
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