Bennett was born on February 11, 2008, in Sheboygan, WI. We knew immediately there was something different with his eyes, specifically the corneas. We were told the news that Bennett may be blind that next morning. We immediately went to find a specialist at Milwaukee Children’s Hospital. A pediatrician sent us to the Froedert Eye Institute where Bennett was seen by a pediatric specialist. We were then told the doctor could see into the eye and the retina and Bennett would have some functional vision. This is when we were referred to Dr. Struck at UW-Madison children’s Hospital. We did genetic testing and found out that the diagnosis was Axenfeld-Reiger Syndrome (FOXC1).
Throughout the next few years, we were aggressively trying to maintain the vision in both eyes with cornea transplant surgeries, an iridectomy in the left eye, and other surgeries to remove nerve growth in his corneas. Dr. Struck then referred us to Dr. Ken Nischal the head of Pediatric Ophthalmology at the University of Pittsburgh Children’s Hospital, also a world-renowned pediatric ophthalmologist. Dr. Nischal then wanted to first control the issue of glaucoma in both of Bennett’s eyes. Dr. Nischal placed Baerveld Implants on both eyes to work as valves to regulate and release eye pressure. We needed to travel to Pittsburgh, PA multiple times a year from Wisconsin to have check-ups with cornea clarity, cornea transplants, and glaucoma pressure checks.
We then began facing the retina on Bennett’s right eye was beginning to become
unattached. Bennett went through multiple surgeries for retinal reattachment, and this was lead by Dr. Karl Olson of the Retina Vitreous Consultants clinic in Pittsburgh, PA.
Dr. Olson was a retina specialist that performed pediatric retinal attachment surgeries.
Also, Bennett was referred, by Dr. Nischal, to the BrainPort study being researched for use and brain stimulation. (BrainPort Vision Pro translates digital information from a wearable video camera into gentle electrical stimulation patterns on the surface of the tongue. Some users have described it as being able to “see with your tongue”.)
We are forever indebted to these doctors that performed miracles on Bennett’s eyes trying to preserve his vision as his eyes resisted the treatments and were shutting down on him. To this day Bennett has light perception in his right eye, and no light perception in his left eye. We are always open to participate in research and pray for medical breakthroughs that might lead to restoring Bennett’s vision, as well as everyone in the world with this condition.
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