Lily was diagnosed with Optic Nerve Hypoplasia at three months old

By Saryn Chorney
December 20, 2019 09:36 AM
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Many children wish to go to the ballet during the holiday season, but it was a special dream for Lily Lueders. The Austin, Texas, native, who turns 9 years old on Dec. 21, was diagnosed with Optic Nerve Hypoplasia when she was three months old.

The condition causes blindness in her right eye and limited vision (20/800) in her left. Due to a small malformation of the optic nerve in the brain, Lily has troubles with nystagmas (involuntary shaking of the eyes) and issues with depth perception. PEOPLE talked with Lily’s mom, Kimmy Lueders, who says her daughter has learned to navigate the world as she sees it: “She has always done better than we could have imagined.”

Lily and other visually impaired members of the community and their families were invited to view a live performance of The Nutcracker called the “Unseen Ballet” sponsored by Dell Technologies and its partners, eSight and Ballet Austin at The Long Center in Austin on Dec. 5.

With the help of advanced assistive eyewear technology, Lily and other guests were able to see the classic, Christmas-themed ballet for the first time. Using a cutting-edge camera, smart algorithms and high-resolution screens, eSight creates a crystal clear, real-time image of what is in front of the user, enabling people with central vision loss to see and live independently.

Credit: Dell Technologies

“As sighted parents, we cannot fathom missing that sense,” says Lily’s mom, Kimmy. “But we have always strived to provide early childhood support and today she is thriving. She confuses me because the girl can accidentally bump into a pole one day (if she isn’t paying attention), but pick up a quarter off the sidewalk the next day. The truth is, we have full expectations and faith in her and, in turn, she is one of the bravest, most independent people I know.”

Credit: Dell Technologies

Kimmy and Dustin Lueders first noticed Lily’s eyes crossing and a lack of object tracking when she was a baby. Because her optic nerve isn’t fully formed, Lily’s brain receives fewer “pixels” or pictures collected by the eyeball. Glasses don’t correct this impairment, though she wears them to protect her eyes. Lily currently attends occupational and speech therapy four times a week to promote self-awareness, while her parents provide sensory activities and tools such as weighted blankets, Thera bands (on her chair to kick against) and oral chews to help with cognitive focus and to fend off “stemming activities,” such as rocking back and forth during a conversation or hand flapping.

Credit: Dell Technologies

Kimmy says the first eSight fitting was very cool: Lily could read letters off a vision chart across the room for the first time. The technology has many remarkable features; when plugged into the computer for the first time, Lily was “awestruck.” She describes using eSight as being in a black and white movie where she can change and control the contrast colors through her glasses. They provide a fuller, more in-depth picture of the world around her.

Credit: Dell Technologies

“The first couple tries at home, she would have these moments where words would fail and she would just let out this excited giggle,” says Kimmy. “It really is the sweetest thing for a mother to experience her child experiencing the world like never before.”

Credit: Dell Technologies

Lily’s parents are confident the eSight glasses will provide a huge impact in making the computer screen a lot more accessible during school: “She works very hard and has come a long way,” says Kimmy. “Her life is not solely defined by lack of sight. We don’t exhaust ourselves trying to find a cure. She navigates life with such strength and determination … eSight adds a huge element of mobility, and [the ability to] experience more of the world outside of the school building. That’s huge.”

Credit: Dell Technologies

Coincidentally, Lily has always been a fan of ballerinas, and from a very early age one of her habits was a love of spinning. “She can spin and spin and not get dizzy and we’ve always joked she would make a ballerina dizzy,” laughs Kimmy. The Lueders are currently searching for an all-abilities ballet class for Lily to join.

“Lily was absolutely delighted by the ballet. She is not one to sit still, but there was a calmness and easy stillness to her during the performance,” says her mom, Kimmy. “[It] was the most impactful thing she has experienced with the eSight [glasses]. She was enamored with the beautiful twirling dancers, of course, but to my surprise she appreciated the entire set production the most. She absolutely loved seeing the details on the edges of the stage and the change of each set. I think the snow scene was her favorite. The giant beautiful snowflakes and falling snow. It was magic!”

Less magical, however, is the cost of four therapy sessions a week. The young family often finds themselves struggling to pay bills and provide support for Lily and her younger brother, James. Anyone who feels inspired to help can check out Lily’s Go Fund Me page.

Credit: Dell Technologies

Kimmy says the Lueders’s Christmas plans are family-centered. Holiday lights, movies and sweet treats are a big tradition in their household. Will The Nutcracker become a tradition for years to come?

“We have talked about how special of a night it was for all of us many times since the show,” says Kimmy. “Lily is a very special little girl who deserves the world. eSight and Dell helped make that world a little more accessible.”