April 2024

With Brittle Cornea Syndrome, everyone worried about me or my sister getting hurt, as our extremely fragile eyes were always at high risk for corneal rupture. Being different, left out of activities that were deemed unsafe, and having what seemed like an army of adults looking out for us was not always something that felt great. My mom referred to this period as her “prison of fear.” For years, we went to Cincinnati Children’s Hospital every three months for multiple appointments. We alternated our appointments between our cornea specialist, Dr. Kaufman, and our ophthalmologist, Dr. Lopper. They gave us the best chance of staying ahead of anything that could further impair our sight. With all the precautions taken, it still was not enough to curb this progressive Syndrome. It was in 2013, when I was eight, that I received two emergency cornea transplants in the span of two months, and our entire world turned right-side-up. It freed us all from that “prison of fear.” Without the courage and generosity of the people who chose to opt-in for organ donation, I would not have my sight today. I am confident that if the magnitude of such a gift were known, everyone would want to be a donor.

Cornea Transplant Recipient

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