Sometimes when I’m with Hannah I think of all the things I take for granted, like riding my bike, painting and drawing. Her illness means she can’t do any of them.”
There’s sadness and an underlying sense of frustration in nine-year-old Rhea Kara’s voice, as she talks about her friend Hannah, and the debilitating condition she suffers from. Hannah has Rett Syndrome, a neurodevelopmental disorder that causes severe physical and mental disability in early childhood.
Trapped in a body that can’t obey signals from the brain, people like Hannah are unable to walk or talk, but often understand and want to express more than they can show. Scientists have made positive progress, but Rett, unfortunately, remains an illness without
a cure.
Rhea first heard about the syndrome last year, when her south London school chose to support Reverse Rett, which funds research into the disease. “Rhea came home incredibly moved by what she’d heard about Rett in class,” says her mother, Roshan, who suggested that Rhea, a keen artist, should try selling her work to raise funds.
“I was always telling her how good her paintings were, but she thought I was biased because I’m her mum,” says Roshan. “By selling her art, I was hoping that Rhea would make money for the charity, but also start believing in herself.”
Rhea came up with the idea of producing 100 paintings in 100 days, and little more than a year later, having raised more than £9,000 for Reverse Rett, she’s finally recognising the value of her art, and the difference it can make in the lives of girls like Hannah.
Rhea’s subjects range from ice-creams to elephants, sunsets to sneakers, and her canvases have been snapped up at school fetes. She’s also started producing tote bags featuring her designs. Prime Minister David Cameron even has one of her paintings on the wall in Downing Street, and earlier this year he presented Rhea with a Points of Light Award in recognition of her work.
Rhea is also inspiring young people around the globe through GapKids ED, the new collection for Gap in collaboration with Ellen DeGeneres, which celebrates girls, encouraging them to achieve the extraordinary. “I can’t imagine how hard life must be for Hannah,” says Rhea. “But I’ll keep raising money to help. I won’t stop until we find a cure.”
Find out how you can support Rhea’s fundraising campaign at rheaforreverserett.co.uk
