Sue Townsend, MOMS for Sight, Inc., Ormond Beach, FL
I have two daughters, ages 29 and 30, who are affected by an autosomal recessive eye disease called Leber Congenital Amaurosis or LCA. They have two older siblings who are not affected but may be carriers. Our daughters were diagnosed as toddlers and gradually lost most of their vision by the time they were 20. They attended public schools with the help of lots of accessible technology, teachers of the visually impaired and orientation and mobility instructors. Both girls received undergraduate degrees from Florida State University. Our oldest daughter went on to the University of Colorado, earned a Doctorate of Physical Therapy (DPT), and is now the director of an outpatient pediatric rehab clinic. Her life is full with her career, marriage, and new baby girl. Our younger daughter is a licensed clinical social worker (LCSW) and board certified music therapist.
Recently, we were able to do genetic testing through the Foundation Fighting Blindness (FFB) and learned that the girls’ specific gene mutation is RDH12 or LCA-13. Our family actively participates in fundraising for research funded by the FFB and the RDH12 Fund for Sight with the hope that a cure will be found.
A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION FOR MOMS FOR SIGHT, INC. MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE 1-800-HELP FLA (435-7352). REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.