WILLIAMSBURG, Va. (WAVY) — October is Rett Syndrome Awareness Month and one Virginia family is spending their time bringing awareness to the disorder.
According to the National Institutes of Health (NIH), Rett Syndrome is a neurodevelopment disorder that slows development and can cause the loss of motor, sensory, cognitive, emotional, and autonomic functions.
That includes the ability to walk and talk and can also cause seizures, intellectual disability, and sleep problems.
It’s a rare disorder that’s more common in girls, affecting one in every 10 to 15,000, according to the NIH. It’s even more rare in boys.
Leslie and Tarun Mehta’s 3-year-old daughter, Brooke, was diagnosed with the disorder after they noticed she wasn’t reaching certain childhood milestones.
“It was difficult at first to hear she would likely be non-verbal for the rest of her life, she couldn’t hold a bottle, she might not be able to walk,” they said.
According to the NIH, the disorder is often misdiagnosed because it shows signs of others disorders.
“You have to think of it in terms of being a diagnostic of cerebral palsy, autism, anxiety, Parkinson’s, epilepsy. It has symptoms of all of them. It’s challenging to have to deal with,” the Mehta’s said.
And because of those symptoms, Brooke spends a lot of time at doctor’s and specialist’s appointments.
She travels all the way to Atlanta for the closest Rett specialist, according to her parents.
“Occupational, speech, physical therapy weekly, treatments, various appointments, sleep studies, overnight studies, so it’s a lot of work,” they said.
But the Mehta’s say they have a strong support system from friends, family, and even Brooke’s daycare who are all participating in bringing awareness to Rett this month.
They’re optimistic about finding a cure because of medical advancements and believe that if more people knew, the chances to finding a cure would increase.
“I think it’s an exciting time for Rett. Who knows what the possibilities are? She could be a Harvard grad for all we know. That’s why it’s so exciting. We’re hoping this awareness will lead to more people supporting,” they said.
The Mehta’s said that you can help bring awareness to Rett Syndrome by wearing purple for the month of October or by donating to organizations online like https://www.rettsyndrome.org/. and https://reverserett.org/