The Shah Family

The Shah family (from left): Nita, Anushka and Animesh        (Photo provided) 

Anushka Shah, an 18-year-old honor roll student at Fort Zumwalt West High, maintains a 3.88 grade point average, is an avid social media user, and has a soft spot for Shakespeare, specifically Julius Caesar.

Anushka also has Rett syndrome, a rare genetic neurological disorder that renders individuals with no ability to speak or use any sort of voluntary motor movement, and also comes with other challenges.

Rett syndrome affects 1 in 10,000 females (and is more rare in males). According to the International Rett Syndrome Foundation, the disorder displays itself in missed milestones or regression beginning around ages 6 to 18 months, leading to impairments that affect nearly every aspect of life.

“We noticed some milestone delays when she was around 18 months old,” explained Anushka’s father, Animesh. “She had begun to babble and walk, but then one day she just wasn’t herself. We took her to the pediatrician, then to John Hopkins. The results came back on her second birthday.”

The Shah family was living in Maryland when Anushka was first diagnosed. Animesh and his wife, Nita, started doing their own research as soon as they received the diagnosis. That’s when they learned how rare the disease was. The gene that causes Rett syndrome was only recently discovered in 1999.

Animesh said, “I just thought OK, now what? What can we do? How can we help? What will Anushka’s future look like?”

Nita said the family was very fortunate to be immediately connected with the International Rett Syndrome Foundation and were able to talk to the parent who started the foundation.

“We knew we needed to find a good education for Anushka because she is so very smart. Methods of communication might be unconventional, but that does not limit her potential,” Nita said.

Through the foundation, the Shahs learned about a family in O’Fallon whose child with Rett syndrome was thriving at Ostmann Elementary, and they knew Anushka would benefit from a similar inclusive educational environment.

Within three months, Animesh and Nita quit their jobs in Maryland, moved to O’Fallon and enrolled Anushka at Ostmann. During those school years, Anushka received multiple educational awards, including the prestigious Presidential award in fifth grade. In high school, she received the Positive Peer Influence award as well as a Super Star award from Night of Superstars, an annual red carpet charity event that honors children and youth who triumph over adversity with courage, hard work and big hearts.

“Anushka is teaching us to be courageous, resilient and hopeful. We do everything possible to help her achieve her goals. Never tell a parent their child can’t learn or can’t do something – we will always believe in our children,” Nita said.

Anushka does not let anything hold her back.

“I overcome medical situations and work hard to achieve my goals. I am a good listener and I persevere. Rett syndrome is not comfortable, but I am hopeful for the cure,” she said.

Anushka communicates using a tablet-like device from assistive technology company Tobii Dynavox. The device tracks the retina of Anushka’s eyes allowing her to select icons related to words and phrases, which it speaks for her.

“It helps me communicate with my eyes,” Anushka said. “I know, I am the coolest!”

In eighth grade at Fort Zumwalt Middle, Anushka used the device to participate in band and perform with her peers. The music piece was programmed into the device, and Anushka played her part with her eyes during the performances.

“Anushka has achieved success because there is an army of people who have loved her – family, friends, peers, coaches, doctors, neighbors, teachers, professionals. The list is long,” Animesh said. “It really does take a village and that village has become our support network. We are grateful, and fortunate, to have so many of them.”

Animesh was recently appointed chairman of the Missouri Developmental Disabilities Council by Gov. Mike Parson. His role will be to affect system and policy change in Missouri for individuals with developmental disabilities. He has been to Capitol Hill multiple times to push through research policies for rare diseases.

“Rett syndrome is challenging, but not insurmountable,” Animesh said. “Anushka fights every day and teaches all of us to not take anything lying down – that we can fight through our obstacles, no matter what they are. Medical challenges may come, but there is always the hope that if we, as a community, come together, and as a whole give empathy, love and understanding, and believe in one another, we can overcome the worst of it.

“As a society we need to start thinking outside the box because everyone has potential. A lot of people see stigma in developmental disabilities, but if you look on the other side of things, you will realize the many possibilities. Because of Anushka, we are inspired every single day. My goal is that, eventually, we reach a level where every individual is self-aware of their capabilities and their rights.”

Meanwhile, Anushka is pursuing her own possibilities. Recently, she applied for and was awarded a position with the St. Charles County Library Teen Advisory Board to review literature.

“Literature helps you open your perspective and helps you make right choices,” Anushka said. “I believe in the quote from JK Rowling, ‘Something magical happens when you read a good book.’ Someday I would like to write fiction books.”

For now, the search is on for a college for Anushka that can help her achieve her dreams. They said they will welcome any suggestions or ideas for an inclusive college for Anushka to achieve her educational goals. You can email them at ouranshu@gmail.com.

“Anushka has taught us that anything is possible,” Nita said. “She is choosing a hero’s path.