Jillian Nava is a happy 4 year old little girl that is losing both her vision and hearing. She was born with a very rare disease
that affects these two senses. The Columbia and Lexington Lions Clubs were contacted by Jillian’s mother, Carolyn Nava,
inquiring about the possibility of the Lions assisting her by purchasing a Braille Writer. Carolyn has been informed that Jillian
will be totally blind before she reaches high school. She began taking classes this year to learn to read and write braille.
There are braille writers at the school, but Jillian did not have the ability to purchase one to practice at home.
The two Lions Clubs immediately began work on this project. On July 21st, representatives of the Columbia and Lexington Lions
invited Jillian and her family to the South Carolina Lions offices for a presentation of her very own braille writer and a special
backpack for transporting it to and from school. Jillian was very excited as were her mother and brother.
More about Jillian’s disease.
Jillian has autosomal dominant optic atrophy (ADOA)-plus syndrome, which includes vision loss, weakness in the muscles that control eye movement, difficulty
with balance and coordination, hearing loss, disturbances in the nerves used for muscle movement and sensation, and muscleweakness.
In most cases, this mutation replaces the protein building block (amino acid) arginine with the amino acid histidine at position 445 in the OPA1 protein (written as Arg445His or R445H). It is unclear why the R445H mutation causes other features in addition to vision loss in affected individuals. There is no cure for Jillian’s disease at the present time.