Guest Feature: A Story of Resilience

Guest Feature: A Story of Resilience

"We knew our sweet little girl Violet had Dandy Walker Syndrome from about the time I was 34 weeks pregnant with her."

A cyst made up of cerebrospinal fluid was in her head before her brain started forming, causing her cerebellum to be about 1/3rd the size it should be, she’s missing her inferior vermis, and her Pons on her brainstem is small. Children with Dandy Walker Syndrome frequently have comorbid issues with their vision, so we knew to be on the lookout for any vision issues.

When she was about 6 months old, her left eye started turning in so we made her an appointment with a Pediatric Ophthalmologist. The eye doctor had us patch Violet’s stronger eye for an hour a day for several weeks to strengthen her other eye. At the end of the patching, instead of just her left eye turning in, one eye would turn in and then they’d switch and the other would turn.

Her eye doctor told us that because of the neurological damage from her Dandy Walker Syndrome, Violet had monocular vision instead of binocular...basically her brain was only accepting images from one eye at a time. Her brain would use one eye and the other eye would drift, then her brain would switch over to using the other eye. Violet was referred to a Neuro-Ophthalmologist who specializes in vision issues caused from neurological damage.

The Neuro-Ophthalmologist confirmed that Violet did have monocular vision and she was scheduled for eye surgery to tighten her eye muscles to try and force her brain to learn binocular vision. The surgery was relatively quick and the recovery was lightning fast. Within just a few weeks, Violet’s eyes started drifting again. At our two month follow up with Violet’s eye doctor, he told us that it normally takes a patient 10 years for their eyes to undo the surgery that her eyes did in two months. After a few more follow-up appointments, Violet was scheduled for a second eye surgery just four months after her first surgery.

"Thankfully the second surgery was a success and Violet's brain gradually learned how to use bonocular vision."

After Violet’s eye surgeries we set out to help her with her balance. We were referred to a Pediatric Vestibular expert who confirmed that Violet could not feel gravity, did not know where her body was in space and time, and didn’t use her peripheral vision at all to help orient herself. We added Vestibular Rehab Therapy and Vision Therapy to her therapy line-up of Physical Therapy, Occupational Therapy, Speech Therapy, and Hippotherapy. We also added in a gymnastics class both for fun and to help with her vestibular function. Thanks to the success of her eye surgeries, and lots of hard work by Violet and her therapists, she slowly started gaining some vestibular function. She learned to walk independently, but still uses a walker on hard surfaces for safety. She learned to feel gravity and now falls safely, using her hands to brace her fall. She can catch a ball with both hands, and visually track objects (although she’ll always have jerky eye movements while tracking).

Now at age 4, Violet was just prescribed glasses for the first time for farsightedness. Violet attends our local School for the Deaf due to Central Auditory Processing Disorder, so the ability to get a home try-on kit from Jonas Paul Eyewear was so incredibly convenient and appreciated. The adjustable ear pieces give her a secure fit and allows her to wear hearing aids even with her glasses on. Like we normally do whenever Violet gets a new piece of adaptive equipment, we did a little photoshoot with one pair of the glasses from the try-on kit to celebrate.

"We do this in a spirit of thankfulness that we have access to things like walkers and hearing aids and wheelchairs and glasses to help Violet live her best life, and it gets Violet excited about her new gear."

It took less than a week from the time we ordered Violet’s new Jonas Paul glasses until they were delivered to us. Violet loves her glasses and says at least once a day, “my glasses help me see!!” Violet models for several boutiques, sewing pattern designers, and custom fabric designers.

I love that Jonas Paul offers stylish glasses for children that look as amazing as the clothes she’s fortunate enough to model, and with every purchase Jonas Paul gives back to communities that don’t have easy access to vision care.

This incredible story doesn't end here! Follow Violet's journey by following @bridgettw on Instagram.

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