Who is Gavin?

Gavin Robert Stevens was born on October 2, 2008, to proud parents, Troy and Jennifer. It was also on this day, Landon (age 6), became a big brother. Gavin was born healthy and with no complications. But it was shortly after his birth, Jennifer had a mother’s intuition something was not right.

Routine pediatrician appointments did not show any concern with his vision. It was still very unsettling and as the days went by our worry grew. We finally saw a pediatric ophthalmologist four months later after asking for a request to a specialist. It was on that day, our suspicions were confirmed. Within moments of looking into Gavin’s dilated eyes, the doctor slumped back into his chair. He looked at us, and very honestly informed us that Gavin’s condition was “devastating to his vision”, and that we would have to see a pediatric retina specialist in the weeks to follow.

It was at this moment our lives were turned upside down. We walked out of the doctors office, with our little 4 month old baby feeling brokenhearted and overwhelmed with sadness and confusion. We still didn’t have all the answers, and certainly even more unanswered questions.

Months later, he was diagnosed with LCA by Dr. Lee at Children’s Hospital Los Angeles. A disease so unfamiliar, we have never heard of it. The words “there is no cure” rang loud in our ears. The grieving process started. We mourned for his vision, but we didn’t lose focus of the big picture.

Gavin is happy and healthy. We will fight for him to visually enjoy the world as you and I do. At this point, Gavin has one of the severest forms of LCA, as it can present itself differently with each individual affected with LCA. At best, he has light perception, with no visual acuity or central vision. You can say Gavin is completely blind.

Our hope is that Gavin and many others who live their lives in darkness due to retinal diseases, may have an option to receive treatment to correct their vision, when it is available.