An adorable five-year-old boy has to wear sunglasses everyday because sunlight leaves him blinded.
Leo Lake, from Hove, has to endure excruciating pain if he forgets to wear prescription sunglasses.
He suffers from Joubert syndrome, a rare genetic condition that impacts on his balance and co-ordination and leaves him in agony when exposed to brightness and sunlight.
Even the simple and beautiful pleasure of seeing snow is barred for Leo as the reflection of light on snow hurts his delicate eyes.
Born in South Africa, doctors there told his mother, Hannah, about his condition.
It wasn't until they moved back to the UK that he was finally diagnosed at the age of three.
She said: "When we first moved back Leo seemed a lot happier, I missed the sunshine, but was much better.
"It was at the age of two when he still wasn't walking that I became really concerned."
Joubert syndrome means the cerebellum, the part of the brain that controls balance and co-ordination, is underdeveloped.
Symptoms include poor sight and problems with movement in addition to sensitivity to sunlight.
Young Leo is only able to see one metre in front of him even with his special glasses on.
He has ataxia and kidney cysts that will eventually lead to kidney failure.
There is no cure for the condition that robs Leo of his sight.
But Ms Lake has set up her own foundation, VisKid, with the aim of raising enough money to find a solution for Leo's blindness.
Hannah said: "Without his glasses, he can't see in bright lights and sunlight, it's excruciatingly painful for him, he just screams and cries.
"I hope that within his life time the cure will be made available."
So far she has managed to raise £1,500, but £250,000 is needed to fund the three-year research into a cure.
Hannah said: "Leo knows he's different to other children, but he still doesn't fully understand his condition.
"He's very popular with the other kids, they love him, so luckily his glasses haven't caused too much of a stir at school.
"People ask him why he wears sunglasses all the time, I tell him to say they're his magic glasses to help him see.
"Luckily he thinks his shades are cool."