Mind-Eye Helps Teenager Overcome Limitations of Rare Klippel-Feil Syndrome

Born with a rare skeletal abnormality – Klippel-Feil syndrome – which inhibits neck and head movement, Josslen Hernandez always had to find ways to “adapt” in order to do what kids without such bone disorders can do, her mom says. But, a visit to the Mind-Eye Institute in Northbrook, Ill. and a prescribed pair of therapeutic “brain” eyeglasses helped change that.

“The glasses gave me confidence and more focus. I felt like I could do anything,” says Josslen, now a teenager.

And, “anything” she has, joining her local recreational softball team at age 12, learning the game and the rules, then deciding on her own that she wanted to be a pitcher. Facing the challenge head-on, Josslen taught herself how to fast-pitch in backyard practices with her dad, becoming her team’s starting pitcher for the 2019 fall season.

That’s true confidence.

When recently given a homework assignment in her language arts class to prepare a report about “someone who inspires you,” Josslen talked about herself, how she overcame the limitations of her syndrome and a seven-hour surgery, in which screws were inserted at the bottom of her skull and in her spine and rods run down her neck. “After my report, my friends told me how proud they were of me,” Josslen relates.

“Who says you can’t be your own hero?” asks Josslen’s mom, Shelly, of Schaumburg, Ill. “Klippel-Feil syndrome and related issues do not define Josslen; in fact, they are exactly what make her so unique and inspire her to overcome the odds — perfect imperfections.”

The glasses also have helped improve Josslen’s penmanship and her ability to “write and color within the lines” and have shifted object positions to a different location, eliminating need for adaptive slant boards and lower-seat desks at school, says Shelly.

Now, Josslen has received a second eyeglass prescription from the Mind-Eye Institute and, for the first time, “she is able to see with both eyes,” says Shelly, with tears of joy – and pride – in her eyes. Joy – because, until Josslen underwent a second round of testing at the Mind-Eye Institute earlier in 2019, her parents had been unaware that her left eye was not being used and she was literally using only her right eye to read, write, look at stationary objects and perform other activities.

“We are especially hopeful this second set of eyeglasses will help Josslen in the batter’s box,” says Shelly, herself a softball aficionado, having played for many years. “Josslen has struggled as a right-handed batter because she could not see the ball coming at her until it was almost at the plate.”

Wearing glasses is not new for Josslen. At an earlier age, she had undergone standard eye testing by optometrists and given eyeglasses intended simply to make things clearer. “Every eye professional we saw had a different diagnosis, but the eyeglasses prescribed never resulted in any dramatic improvements for Josslen,” Shelly recalls. “In fact, Josslen complained all the time about wearing them, saying she did not want ‘those things on my face.’”

Then Josslen received her “brain” glasses — her first pair prescribed after several hours of advanced, neuro-optometric rehabilitative testing at the Mind-Eye Institute.

“At that point, we went from a child who fought against wearing glasses to one who slept with them next to her bed and then put them on again in the morning as soon as she woke up because she could literally feel the difference,” Shelly says.

But what made the “difference?”

The Mind-Eye Institute is recognized worldwide for its work in assessing “retinal processing.” The retina is made of brain tissue and sends signals to more than simply an eyesight center. Retinal signals combine (partially beneath a conscious level of awareness) with other sensory signals – from hearing, smell, taste and touch. Further brain processing synthesizes the information and reacts and responds depending on internal sensory signals, explains Mind-Eye founder and executive research director Deborah Zelinsky, OD, who also is Josslen’s optometrist. Dr. Zelinsky’s studies of retinal stimulation have been described in publications and courses throughout the world.

“When intact, visual processing enables people to understand and interact appropriately to the world around them. If brain circuitry is out of sync because it has been disrupted – or, in Josslen’s case, under-developed — people can become confused about their surrounding environment and exhibit inappropriate reactions and responses,” Dr. Zelinsky says. “Typical eye examinations use 20/20 as a goal; our team uses comfort, instead.”

She states, “the retina remains an overlooked part of the central nervous system. Modification of retinal inputs simultaneously affects body posture and biochemistry, as well as spatial awareness, movement, perception and selective attention to sound.”

At the Mind-Eye Institute, “we are enhancing brain function, using therapeutic eyeglasses – Brainwear™– as one way to alter the environment,” she continues. “Even people who do not need glasses to see clearly can benefit, because our glasses are designed for stimulating the edges of the eye in addition to the center.”

Dr. Zelinsky has devoted her career to neuro-optometric rehabilitation and development of advanced methods for assessing brain function, with emphasis on the often-untested linkage between eye and ears. “With the proper mix of filters, lenses and/or prisms, we can prescribe eyeglasses that modify a patient’s eye-ear integration,” she says.

“I cannot wait to tell our neurologist about the wonderful changes Josslen has had. These glasses really do more than change eyesight,” laughs Shelly, adding how grateful she is for what the Mind-Eye team and Dr. Zelinsky have done on behalf of her daughter.

“The Mind-Eye is the most wonderful place,” Shelly says. “If you want to take your child to people who listen, who understand, who get the connection between the mind and eye, then the Mind-Eye Institute is where you go.”

Josslen agrees. In fact, she now intends to try out for the softball team at Hoffman Estates High School, where she plans to enroll next academic year.

For Josslen, Mind-Eye means “Batter up!”