27 Sep 2012
- Written by Wiley Henry
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When a toddler reaches the age of 16 months, his or her parents expect their little bundle of joy to be playful, mobile, energetic and demanding. But no one would expect that precious moment to be over-shadowed by a blinding disease that would become problematic over time.
Such was the case when Alicia Hall discovered that her son Gino LaVon Hall Jr.'s left eye had begun shifting asymmetrically in relation to his right eye. So she took him immediately to see an ophthalmologist at Southern College of Optometry.
"They thought he had a parasite in his eye," she said.
Wondering what had infested her son's eye, Hall was given a referral to take Gino to see the world renowned Dr. Steven Charles, founder and CEO of the Charles Retina Institute, the world's foremost retinal clinics. Dr. Charles discovered the problem immediately: Juvenile X-Linked Retinoschisis.
"The disease only affects males. 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 Charles, one of the world's leading vitreoretinal surgeons, who has performed more than 30,000 surgeries, operated in 25 countries, lectured in 50, authored a leading textbook and more than 150 articles, and holds 125 patents.
Hall didn't know what Juvenile X-Linked Retinoschisis really was until she started researching her family history and the disease itself. She learned that Gino is one of 5,000 to 25,000 males worldwide affected by this hereditary disease. According to the Genetics Home Reference website www.ghr.nlm.nih.gov, the disease causes progressive loss of central and peripheral vision due to retinal degeneration.
"It was like it happened overnight. His blood vessels had broken and his retina was detached," said Hall, whose father and 18-year-old nephew were also affected by Retinoschisis at an early age and now classified as legally blind.
"It's a disease that leads to blindness in about one in every 5,000 boys," said Hall, learning that a cure for Retinoschisis has not been found. "I knew what to expect even though he wasn't showing any signs yet."
On June 3, 2005, one month after Gino's diagnosis, Dr. Charles performed surgery to repair the retina and to prevent the sight-stealing disease from degenerating. Two months later, the 16-month-old son of Gino Sr. and Alicia Hall would undergo another surgery. He would require additional surgery in 2007, 2011 and again in July of this year at the age of 8.
The last surgery didn't go so well, said Hall, relying on her faith to get her through. Now Gino is completely blind in his left eye and Charles is carefully monitoring his right eye to make sure his retina isn't detaching.
"He'll require follow-up...and he'll do well," said Charles. "But we can't let him go unchecked."
A clarion call to fight blindness...
Gino seems oblivious to what is happening to him and he's not ready to yield one iota to impending darkness. He is still playful, mobile, energetic and unafraid that Retinoschisis could rob him of his eyesight altogether. He was fearful initially when Charles performed the first of five surgeries on his left eye.
"I was worried. I didn't know what they were going to do to me," said Gino, a cerebral third-grader whose favorite subjects are math and history at Downtown Elementary School.
Gino's mother calls him "Professor," because he's studious and does very well academically. He's also somewhat of an ambassador for VisionWalk, an event that the Illinois-based Foundation Fighting Blindness sponsors to help raise money for research and help find a cure for various eye diseases.
This is the fifth year for VisionWalk, the signature fundraising event for FFB, the largest non-governmental supporter of retinal degeneration research in the world. Hundreds are expected to participate in the 5K walk-a-thon on Oct. 20 at 10 a.m. in Overton Park. Hall is the team captain for "Walking for Gino." They're trying to reach their goal of $500 for the non-profit. (For more information, visit www.FightBlindness.org/MemphisVisionWalk.)
"We're asking people to donate as much as they can," said Gino. "I want to help the foundation find a cure."
Gino says his illness won't stop him from achieving his goals, a resolve he illustrates by his happy-go-lucky nature. The problem is he can't make up his mind whether he wants to be a teacher, nurse, doctor or fireman.
"His teachers are amazed," Hall said. "They didn't know he had an eye disease until we started talking. That's because he likes to keep his independence and remain normal."
Gino doesn't do the large font books or use a magnifier, even though they are available to him, said Hall, trying to cope with Gino's challenges while also raising his spirited 4-year-old sister, Gabrielle, a kindergartener.
Hall is preparing Gino for what could be a life of darkness. For two consecutive summers, Gino has participated in a vision summer camp at Colonial Vision and Hearing Center, a Memphis City Schools program for visually impaired children. He gets a ride to the camp on the school bus.
"We do arts and crafts," said Gino, flashing a radiant smile. "We also learn how to walk people who are blind."
"He wants to learn Braille," said Hall.
"I know there is a potential for him to lose his sight. I just didn't think it would be this soon."