Ectopic Lentis - dislocated lenses

When my older son was born we noticed that he was very quiet and would play for long periods of time with his toys on the floor holding them ever so close to his face. We didn’t think much of it at the time. We had his vision tested at about 3 years old at a local eyeglass store and they told us that no matter what they tried they could not get a reading on his eyesight. We then took him to a Pediatric Ophthalmologist who diagnosed him with Ectopia Lentis. This is a condition where the lenses in the eye are dislocated. Our first doctor told us that our son may never live a normal life and that he may never drive a car, see well or play sports. We were devastated. We switched to a more sensitive Doctor who tried to correct this condition with special eyeglasses but my son’s lenses were too dislocated. We finally made the difficult decision to remove his lenses which ultimately left him as legally blind. He was fitted with special glasses and contacts and after years of trips back and forth to the specialist he can now see very well and is doing great in school and has been playing ice and deck hockey. He is truly passionate about anything related to Hockey.
We were blessed with another son who was diagnosed with the same condition. He has undergone the same surgery as his brother in one eye. He is also responding very well to the corrections and is doing great in school and also plays ice and deck hockey.

We have only found one other person with this particular condition. If you have a similar issue we would love to hear from you.