We are the Kolbusz Family from Connecticut. Mark and I (Sue) have two fun loving, intelligent, athletic and active boys! Trevor is 9 and Tyler is 7. Both boys keep us busy with their many activities! Trevor, our son with LCA has such a positive outlook on life. He is a very sweet, caring, and positive person, and all together a very genuine young boy with a strong desire to be the best at everything he does!
When Trevor was about 9 months old, we noticed that he was unable to see in the dark. He had always hit his developmental milestones on time or early, but we weren’t sure why he would bump into objects in the dark. After several trips to eye doctors and retinal specialists, he was finally diagnosed in Boston with LCA when he was just 17 months old. At the time, we were told that he was blind and that there was no treatment for his degenerative retinal disease. As you could imagine, the diagnosis was devastating to us. About a year later, we learned that Trevor had the CRB1 gene mutation causing his LCA.
After the initial shock of the diagnosis and at such a young age, Trevor taught us many things! No one was going to feel sorry for him, because not only was he was going to do everything that all his friends do, he was going to do those things just as well! We love his desire to succeed, and although we’ve been hesitant to let him do some activities because of his vision, he has shown us time and time again, that he is a very capable little boy. Trevor learned to ice skate at 3 years old and began riding a bike without training wheels all by himself at 5 years old. He started playing recreation soccer with his typical peers in second grade and just this year, he make a regional U9 travel soccer team! Trevor also competes for a local swim team in the winter months and has competed in several running races in our area.
Although Trevor has experienced many successes in his young life, he has also had to deal with the reality of only having about 10% of our vision. He has very little central vision and uses what peripheral vision he has along with his other senses for everything he does. School has been a roller coaster ride at times in our small town where there are no other children with visual impairments and teachers are unsure of how to teach him. We’re thankful for the support he gets from Connecticut’s state services for the blind and for a wonderful group of teachers that he has this year! Learning braille has been very challenging but he never complains or give up! Although he accepts his vision loss, he knows that things are more difficult for him and he has goals in life that include having vision like everyone else. At 9 years of age, he would love to be able to play baseball or hockey with his brother and friends, read books and do his school work in print, and see the faces of those he loves! He also holds out hope that one day he will be able to drive a car… and the list goes on!
We feel very lucky to have connected with the families of other children with the LCA, CRB1 diagnosis. The Doctors and their research have produced such amazing accomplishments so far and the reality of having a treatment for our children is truly within sight! However, research is expensive and not all projects have funding available at this time.
Thank you for learning about the Curing Retinal Blindness Foundation and for helping to make our children’s dreams come true!