If you were asked to define Retinoschisis – or pronounce it for that matter – most likely you'd be stumped. That's what happened to Gino and Alicia L. Hall when Dr. Steven Charles, founder and CEO of the renowned Charles Retina Institute in Memphis, diagnosed their son, Gino LaVon Hall Jr., with Juvenile X-Linked Retinoschisis.
Retinoschisis is a blinding, hereditary disease that affects males – about 5,000 to 25,000 of them worldwide – and causes progressive loss of central and peripheral vision due to a split of the retina or retinal degeneration.
Gino Jr. has suffered from it since his mother first noticed a problem with his left eye when he was 16 months old. Now he's 10 years old and blind in one eye. Dr. Charles is monitoring the other eye to make sure it doesn't degenerate.
Alicia Hall is on a mission to find a cure and save her son's sight. She has been relentless in her quest and now focused on raising funds through the GLH Retinoschisis Foundation, a nonprofit she founded in January.
On Saturday, May 10th, at 5 p.m., the Foundation will present a hair and fashion show at the Fogelman Executive Center at 330 Innovation Drive, Suite 206, on the University of Memphis campus. Guest models include Dr. Tonya Lyons, the Rev. Sidney Malone, and Yvette Whiteside. Stacey Merino will provide music. Vendors also will be available. All proceeds go directly to the GLH Retinoschisis Foundation for X-Linked Juvenile Retinoschisis research.
"The purpose of the Foundation is to help raise awareness for Retinoschisis as well as find a cure for Retinoschisis," said Hall, hoping and praying a cure is in sight. "It's just that no one has looked for a cure because the disease is so rare."
"Half the boys get it in families if the mother is the carrier. It's gender specific and has nothing to do with stress or any other disease," said Dr. Charles, one of the world's leading vitreoretinal surgeons who had performed more than 30,000 surgeries in 25 countries.
After researching her family history, Hall learned that her father and one of her nephews have struggled with Retinoschisis since they were very young and now classified as legally blind. She is preparing her son for what could be a life of darkness.
Recounting the gist of a recent conversation with her son, Hall said, "He wishes he could see. That's why this Foundation is so important. My baby wants to see."