by Frank Covich
My son, Skylar, was diagnosed with Leber's 24 years ago and so I understand your feelings deeply. I would like to share the story of Skylar with you so as to show you that Leber's is not the end, it is the beginning of your child's path that can be filled with joy, success, and completeness. With your support, guidance, and love your child can excel.
Skylar is the example of what can happen.
In 2009 Skylar graduated from St Mary's College of California at the top of his class with multiple awards. He was then highly recruited for graduate studies. His blindness has never held him back from anything. He is now a UCSB PhD Student and professor in training.
Why is this? Skylar learned very early on that in order to get things done and experience life you need to be self driven.
Starting with early intervention, in our case from the Jewish Guild For the Blind in New York, Skylar was prompted to participate in adapting to the learning process. A blind child needs this early help.
We also searched out many extra activities for Skylar. I encourage seeking horseback riding, swimming and tandem bike riding, and skiing.
Music is paramount. Piano lessons create a pattern of development and sense of achievement. Skylar joined the grammar school marching band and orchestra where he learned clarinet. Most people never knew that a tall member of the band at the biggest high school in the area was blind. He had a sighted guide, but never missed a beat in dozens of parades, football halftime shows, formal concerts, and events. This gave him a platform of social interaction and great pride in his accomplishments.
Parents need to learn about IEP planning and their child's rights to adaptive equipment and aids, mobility training, and any other support which would allow your child to go to school and succeed. Today's computer technology will give your child everything, it will open there life to the world.
Overall, my message is encouragement. Twenty-four years ago, as a parent I was down, sad, and worried. Today my son is the absolute joy of my life. He is a leader already and will surely become a highly successful person in every way. Keep your children safe as they navigate the early world, keep as much stress out of their life as possible, but allow them to explore and grow.
At the same time we don't expect him to do things that a blind person is restricted to do. For example, he cannot drive a car and we accept that. What is normal for your child is their normal and when you accept this you gain happiness.
I hope that my message will help you to understand and feel happy. The absolute joy of my life is just watching my son. He amazes me every single day.
If you'd like to read more about Skylar, check out these articles:
St Mary's College: Respect for All Persons
Skylar Covich: A Success Story
Skylar Covich: A Life of Accomplishment
I just wanted to add that after 24 years of my researching where hope might be in vision improvement for my son, I have talked to some of the top researchers in the world. I even met with Dr William H Dobelle in NY before he passed, he was the inventor of an artificial vision system. He was a great amazing researcher and gentleman and his passing was a real loss. One thing Dr. Dobelle said to me was that he thought the best cure for kids with Leber's would be from regeneration, stem cell or clinical advanced meds developed from new research.
I believe that Dr. Sadda of USC Dohney Eye Institute ( 877-872-3015 ) is a person who you should journey to visit in LA. They have the most advanced photo and analysys equipment and Dr. Sadda is a young emerging specialist who is focused on all that is going on around Leber's research, in fact he very respectfully said to me and Skylar that he believed that the research they are doing at USC might be the road to discover what may benefit my son.
At 64 who knows how long I will live but I feel great that my Son has Dr. Sadda as his friend and lead person to finding the science which might give some vision improvement to him some day. I journey a 1000 miles each year for Skylar's annual visit with Dr Sadda. It is the most important thing that I can do going forward for my son, while I am alive. And it gives me great comfort in knowing that Dr Sadda has a focus on my son and his condition and we are under his care until he finds the treatment that will improve Leber's kids and my son's mobility and visual abilities.
This is the place and this is the Dr you want in your child's life.
Frank Covich
June 2011
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