At first glance, Oleksii seems like a typical, joyful kid. “If you didn't know any better, you would never guess that he has a serious problem with his eyes,” explains his mother, Tetiana.
Eleven-year-old Oleksii suffers from Stargardt disease, a rare eye condition that causes vision loss in children and adults. Despite it being largely genetic, neither of his parents have the disease.
When her son was first diagnosed, Tetiana was devastated and felt helpless. “I could not believe it or live with it. His vision kept getting worse and there was no clear prognosis or treatment. It was like a nightmare,” she says.
Oleksii had already lost ten per cent of his eyesight before his seventh birthday. Before that, everything seemed normal. During an examination with his ophthalmologist, it was revealed that his vision had dropped from 90% to 10%. This occurred over a three-month period.
Today he retains only five per cent of his central vision, but he has full peripheral vision. “When I look at you, I can’t see you, but I can see what’s around me,” Oleksii explains.
Oleksii started painting when he was seven, just after being diagnosed with the disease. He discovered his passion for painting using a spatula instead of a brush. In Ukraine, he found a teacher who taught him the basics and ever since, he has not stopped painting.
Oleksii, his parents and younger brother came to Poland in March 2022 from Kyiv, just after the start of the full-scale war in Ukraine. They settled in Warsaw and currently live in the city’s Praga district. Tetiana and her husband found jobs in the IT sector and Oleksii attends a Polish school. He adapted quickly to the new environment and learned Polish in just under three months.
“I like living in Poland. I play with the kids and I like my school here,” he says.
Despite the difficulties he faces with his vision, Oleksii is very active. “I used to dance a lot when I lived in Ukraine. Now I enjoy painting, playing chess or the guitar, and listening to audiobooks,” he says.
“Recently, he even took part in paralympic games for juniors in swimming and won first place,” says his mother with pride.
Tetiana is a firm believer in finding strength through adversity and the hardships that life may bring.
“Your children can have the same life as you do or even better because this disease can also bring good things into your life,” says Tetiana.
During summer, he used to paint in front of his apartment in Warsaw but now he is practicing his art at a multicultural centre in Praga, where a dozen of his paintings have been on display for several weeks.
Fourteen of his paintings have also been on display at Mudita, a Polish foundation supporting children with disabilities that collaborates with the International Organization for Migration (IOM) in Poland.
Tetiana hopes Oleksii can be an inspiration to other children, not only in Poland but around the world. “We have plans for more exhibitions in the future,” she adds. Her advice to other parents whose children have Stargardt disease or other disabilities is not to dwell on the disease.
“Do everything you can for your child in every moment. Live your life happily and never give up. Love your child, trust them, and always support them to develop their talents.”