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Angie Johnson, MOMS for Sight, Jacksonville, FLAngie has two daughters affected with the rare and blinding retinal degenerative disease called Leber Congenital Amaurosis (LCA). Neither parents are affected with the disease as it occurs when each parent, called carriers, have one gene for the disease paired with one normal gene. Each of the carrier’s children has a 25 percent chance (or 1 chance in 4) of inheriting the two LCA genes, one from each parent, needed to cause the disorder. Carriers are unaffected because they have only one copy of the gene. BOTH of Angie’s girls happened to be the one chance in four. They have limited visually acuity for which they utilize low- vision tools and receive specialized vision training at school and home. Raising two visually impaired children can be overwhelming and joyful all at the same time and Angie and her husband, Jeremiah, continually rely on their support group for strength and comfort. It consists of an amazing group of family, friends, doctors, teachers, and the Foundation Fighting Blindness. While treatment for LCA has not yet been released on the market, current clinical trials have shown immense success and promise for a cure. The Foundation Fighting Blindness (FFB) exists to fund vital research necessary for finding a safe and effective treatment for LCA, as well as, many other retinal diseases. FFB has given Angie hope for a time when her daughters will continue to lead a fulfilled life without the daily struggle of visual impairment.
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