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I am legally blind and work as a peer mentor for the Commission for the Blind. I have never heard of this disorder, but please be aware that there are other option for your grandson then a school for the Blind. Commission for the Blind start working with kids who are transitioning from high school to adult life. In my state there is teachers who work with the kids in the early years and then onto school. In this state there is a program called Child development Center. These folks work with kids from birth to six. Then there is a program called Education Service District. If you have questions check with the Commission for the Blind and they probably can hook you up with the programs you will need for your grandson. I would suggest going through either Crippled Childrens (Chid Development and Rehabilitation) or the State University Medical Center to find out if genetic testing needs to be done with other family members. Another place is to check with the Lions Clubs and Shrinners. When my daughter was born disabled these are the places I was sent too. Good luck and if you need further assistance contact me