Bryson’s Vision

About

This non-profit foundation was started in 2023 by Danny and Jennifer McManis in honor of their son Bryson. In October 2021 Bryson Kai was born with idiopathic congenital blindness and was diagnosed when he was 4 months old.

After several weeks of noticing that Bryson seemed to be easily startled, excessively fussy, and was difficult to console, his parents began to question “what was wrong”. Noticing that Bryson did not make eye contact and had severe nystagmus, Bryson’s pediatrician noticed something off-putting about Bryson’s eyes at his 2 month well exam in December 2021. The pediatrician called Nationwide Children’s Hospital Pediatric Ophthalmology Associates, a specialist that the family already had experience with with Bryson’s oldest sibling. The ophthalmologist requested to see Bryson right away.

Upon completing her exam, the specialist informed Danny and Jenny that Bryson had bilateral congenital cataracts, a condition that he was born with that caused cloudiness in the lens of both eyes. Bryson would need surgery to remove the clouded lenses to clear his vision-he would be too young to have a replacement lens and may require additional surgeries in his future for a lens placement.

In February 2022, Bryson went in for his cataract removal surgery. After approximately 30 minutes, the specialist called Danny and Jenny into a private consultation room where she informed them that she discovered an unexpected finding on Bryson’s ultrasound prior to starting the procedure. While she did not go into detail, she did refer Bryson to a retinal specialist at Midwest Retina that again, the family was already familiar with related to Bryson’s oldest sibling.

A week later, Bryson had his follow-up with the retina specialist where ultrasound imaging confirmed that Bryson was blind. Bryson’s retinal nerve’s were underdeveloped and were not attached upon birth which caused them to atrophy, meaning the retinas were too damaged and there was no fix. The retina specialist was sure of his findings, but understanding the questions and doubts Danny and Jenny would have, recommended a retinal group at Associated Retinal Consultants in Michigan, if they wanted a second opinion.

Although they truly trusted the diagnosis, Danny and Jenny felt obligated to have the second opinion exam completed, even if not for them, for Bryson and his questions in the future-what if? One week later, they drove 5 hours from home to meet with more specialists.

After 2 days of further testing and meeting with several different physicians, Bryson was scheduled for another eye surgery. Pre-op testing was required and would be completed closer to home prior to the upcoming surgery in 2 weeks.

Once home, Bryson had an MRI under sedation completed and was referred to a genetic specialist at NCH. While the MRI confirmed bilateral detachment, there were no other significant ocular findings. Genetic testing was initiated and prior to his return to Michigan, DNA testing results were inconclusive.

Bryson was prepped for his next surgery and again was in the OR for less than 30 minutes when the specialists called Danny and Jenny into a private consultation room. The doctor informed them there was indeed no fix for Bryson’s vision. She stated his lenses were like “doilies” with several holes throughout and cloudiness present in what lens had actually developed. Both retinas were detached and due to the dead tissue, they were unable to be reattached or repaired. She also noted hypotony, low intraocular pressure which meant any intervention would risk the integrity of Bryson’s eyes, causing them to collapse and need to be permanently removed posing long-term risks.

After several months of research and testing, specialist after specialist, and many forever unanswered questions, Danny and Jenny did not know what to do next. They began to try to do their own research, to be sure they were prepared to assist Bryson with his development and growth as best as they could. They met many frustrations, as there was a lack of resources for parents of infants with blindness. Many organizations and foundations were geared toward childhood blindness-but what about the babies and toddlers like Bryson?

They were guided by Bryson’s pediatrician to contact the county’s Help Me Grow program. Help Me Grow developed a care plan with a TVI who would further assist them with other needed services in their home to assist with necessary tools to help Bryson.

While their TVI and Help Me Grow have been astounding resources, they continued to feel the need for more. Danny and Jenny strive to be able to assist families similar to their own-a guide for those who may learn their infant/toddler is blind or visually impaired and would need direction themselves on the next steps.

Image of a large wood carved owl wearing a blue hat, holding a silver trumpet with a sleeping baby boy in a gray hat and blue baby blanket sitting next to it.
Image of a baby boy wearing a brown and blue striped sleeper, laying on a blue baby blanket, holding his hands together, smirking with blue polarized sunglasses on.
Image of toddler boy with blonde hair sitting on a blue blanket in the sand at the beach, wearing a red and blue Spider-Man swimsuit with his hands in his lap.