New York woman honors son with nonprofit for his rare disease [Video]

SEPTEMBER IS LEUKODYSTROPHY (loo-ko-DIS-tro-fee) AWARENESS MONTH. RAISING AWARENESS FOR RARE CONDITIONS THAT IMPACT BRAIN FUNCTION. THERE ARE OVER 50 TYPES OF THESE CONDITIONS. INCLUDING ONE RARE AND FATAL KNOWN BRAIN DISORDER. THE CHANCES OF GETTING IT ARE ALMOST ONE IN A MILLION. BUT ONE LITTLE BOY IN OUR REGION IS FACING THOSE ODDS. NBC5S ANNA GUBER SAT DOWN WITH THE DYER FAMILY. SHE JOINS US LIVE NOW IN THE STUDIO WITH MORE ON THE IMPACT OF THEIR SON’S DISEASE. AND HOW THEY’RE SUPPORTING OTHERS… WITH A SIMILAR STORY TO SHARE. LAUREN, ADRIAN, WHEN THE DYER FAMILY WAS GIVEN THE NEWS THAT THEIR SON RONIN HAS COCKAYNE SYNDROME. IT TURNED THEIR WORLD UPSIDE DOWN. THE PROBLEM IS THAT WITH SUCH A RARE CONDITION… THEY DIDN’T FEEL LIKE THEY HAD MANY PLACES TO TURN FOR ANSWERS. SO THEY SET OUT TO CHANGE THAT. <RONIN VIDEO> MEET RONIN DYER. <RONIN PLAYING, LAUGHING, HAPPY> …