Published January 31, 2013
| The Sun
A 5-year-old boy is fighting for his sight because of a rare condition that leaves him blinded by sunlight.
Leo Hake suffers excruciating pain if he does not wear prescription sunglasses that shade his eyes from too much brightness.
He has Joubert syndrome, a genetic condition that means his cerebellum — the part of the brain that controls balance and coordination — is underdeveloped.
It also means he has problems with movement and kidney cysts that will eventually lead to kidney failure.
With the shades, Leo can see just a little more than three feet in front of him.
“When he was 5 weeks old, I realized that when I spoke to him he would smile, but in the wrong direction," said Leo's mother, Hannah, 27..
There is no cure for Joubert syndrome but Hannah has set up the VisKid foundation to raise money in the bid to find a treatment.
“Without his glasses, he can’t see in bright lights and sunlight, it’s excruciatingly painful for him, he just screams and cries," Hannah said. “Luckily, he thinks his shades are cool.”