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This 15-year-old won’t allow his deteriorating eyesight to stop him from creating magnificent drawings.
Cee-Jay Syms (15), who is from Athlone in Cape Town, suffers from keratoconus, a rare condition that affects the structure of the cornea and results in loss of vision. The disease affects only one in 2 000 people worldwide.
The teenager has only 25% vision in his right eye and 20% in his left eye, making daily life a challenge for him.
“It was very difficult to cope at first but after a while I managed to find ways to live with it,” Cee-Jay says.
“I used to bump against everything [at home] but now I take note of every little detail around me.”
Cee-Jay has started drawing as a way of dealing with his harsh reality. “Drawing is my lifelong hobby,” he says.
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Cee-Jay’s mom, Michelle (46), says it’s been heartbreaking for her to witness her son's eyesight deteriorate.
“It’s difficult but we take it one step at a time and we’re getting used to it,” she says.
“I just want him to see better because he’s getting older and soon he’ll be going out into the world and that’s a bit scary.”
Michelle and her husband, Cheslyn, who works at the Western Cape Blood Service, knew something was wrong with Cee-Jay when he constantly rubbed his eyes and started complaining about his vision.
“We initially thought it was sinus but when he was 12 doctors diagnosed him with this condition," Michelle says.
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Cee-Jay has tried numerous glasses and contact lenses to help him see better, but to no avail. He had a corneal cross-linking operation on his right eye last year, when doctors used eyedrop medication and ultraviolet (UV) light to make the tissues in the cornea stronger.
Doctors have now advised the parents to get Cee-Jay a pair of highly customised scleral contact lenses, which cost R20 000, until he is old enough to have a cornea transplant. He's been told the surgery could take place when he's around 20 and physically and emotionally mature enough to cope with the complicated procedure.
“We can’t afford the lenses,” says Michelle, who is currently unemployed.
For now, Cee-Jay is focusing on his artwork and living for the day he can see his drawings better.
“He sits quite close to the book when he draws but he tells me all the time he can manage. When he comes from school, he will sit and draw. When he wants to relax, he draws,” says Michelle, adding that he loves anime.
“At first when I drew something and I looked at it afterward, it was all tilted and skew, so I had to erase everything and start from scratch," Cee-Jay says. “But I’ve managed to cope with now.
The youngster, who attends Christel House, a no-fees school for children from disadvantaged communities, depends on his classmates and teachers to help him see what's written on the chalkboard.
“He’s a very lovable child and he works hard. He’s one of the top students in Grade 9,” his proud mom says.
Although Cee-Jay loves drawing, he hopes to pursue a rather different career.
“I’d like to go to university and become a scientist,” he says. But for now, it's his pens and his creativity that keep him going.
