When Caroline Carper was 10 years old she saw rain falling from the skies for the first time. “So I was in grammar class, and it started to pour down. I was like, ‘Oh my gosh, what is that?’ And my friend goes, ‘That’s rain, you’ve never seen rain before?’ It was like a whole new world.”
Caroline’s eyesight problems emerged shortly after birth, but it was not until her younger brother Cole was also born with poor vision that doctors realised something more serious was afoot. The pair were eventually diagnosed with Leber congenital amaurosis (LCA), a rare inherited retinal disease that left them with severe impairment in both eyes. “I just told people that I was half-blind. That’s really the only way they’d understand,” says Cole.
Their parents decided not to tell them the disease was likely to progress to the point where they would go completely blind. “I just felt like there was no point in burdening them with it at that age, when they’re little,” recalls their mother Ashley. “If you’re an adult, you might be able to handle that – but as a child? I think that’s too much. Privately, sometimes, our hearts might have hurt a little bit, but we have never felt sorry for them.”
None of that heartache is evident when I meet the family at their home in Little Rock, Arkansas, on a hot and humid Saturday morning. Over home-made brownies and iced tea, Caroline and Cole tell me how they received a pioneering treatment known as gene therapy on a clinical trial in 2014, which restored much of their sight. “Basically, they take a gene and they put it in your eye,” explains Caroline, before she is interrupted by her brother, who is apparently outraged that she is leaving out the gory bits. “They put you to sleep and they slice open your eye,” he interjects with a broad grin. “And then they give you a popsicle. The popsicles are the best part.”
With giddy excitement, the pair recall the weeks and months following the treatment, when they saw things properly for the first time — stingrays at the aquarium, the intricate structure of a snowflake, a starry night sky. Cole, now 11, could not contain his excitement when he saw the toy section in the supermarket, especially when he happened upon the shelves with his favourite Nerf guns (he is fiddling with a loaded one as we speak).