Cody is the youngest of our four children. Born a healthy 9 pounds 3 ounces, Cody was different from the start. He hated lying on his back and always preferred to lay sitting up. He had no interest in toys unless they lit up and would stare at lights for hours, earning him the nickname ‘Bug’ from his Grandpa. At 18 months old Cody was classified as legally blind. Until January of 2012, he had been misdiagnosed with a condition that would never worsen and had a high likelihood of increasing. We had been telling him for over 6 years that the silver lining was that his vision would never get worse and might actually improve to the point of being able to drive a car. That dream was curbed this January when at Cody’s annual check up, his vision had dramatically decreased. A few different appointments later and we ended up at the U of M Kellogg Center. After this grueling appointment Cody was diagnosed with LCA and later the genetic testing confirmed it was on the CRB1 gene.
We are an open and honest family that takes the ‘head on’ approach. Even so, it was the hardest day of our lives to learn our little boy was losing what usable vision he had. Telling Cody that his vision was going to continue to worsen broke our hearts. Being the true champ that Cody is, he didn’t let it keep him down. Cody is mainstreamed in school. He continues to learn the core curriculum with his peers but also has lessons in Braille and mobility.
He loves Gym class, science experiments and to ride his bike. He is a very bright and outgoing young man. His smile is infectious and he is very independent. He has truly taught us and everyone around him that there is more than one way to see, and that seeing with your heart can show you so much more! We are blessed to be a part of this journey with our little man.
Though we support Cody and are preparing him for a life without vision, we continue to hope and pray for a cure! Cody has never seen a simple smile or a wave, the stars at night or the look of pride on our faces and we look forward to day when he can!