After a few long-winded, late-night conversations, we made the individual choice that we felt we needed to give Arthur every chance we could to establish his vision. We were going to fight for his sight.
Category Archives: rare diseases
Discovering PHPV/PFV in our Newborn
we called the Pediatric Ophthalmologist on our own and requested an appointment without a referral. They fit us in the next Monday, and immediately knew something was not right in plain sight.
Bohring-Opitz Syndrome Awareness Day
Today, April 6, is Bohring-Opitz Syndrome Awareness Day. Bohring-Opitz Syndrome is a rare genetic syndrome, with myopia being one of the common features of the syndrome. You can read more here. Two years ago, Chad and Taylor shared the story of their daughter Talynn who has Bohring-Opitz Syndrome. They’ve sent an update and some photosContinue reading “Bohring-Opitz Syndrome Awareness Day”