8-year-old not letting rare genetic disorder rob his happiness

Zachary Root was born deaf and has Usher syndrome, which will eventually rob him of his vision. But he's doing something about it.

Video Transcript

- Here's a challenge for you: make a bowl of cereal blindfolded. It's called the cereal challenge. Started by a little boy in New Jersey who wants you to realize what he's facing: total blindness.

Zachary Root was born deaf and suffers from Usher syndrome, which eventually robs you of your vision. Zachary's family, saying it's a race against time to raise donations and to slow his vision loss. Here's Michelle Charlesworth.

ZACHARY ROOT: Hello, people out there! I'm going to do the cereal challenge.

MICHELLE CHARLESWORTH (VOICEOVER): 8-year-old Zachary has had major hearing and sight challenges since birth. But you would never know it. His spirit outshines everything.

ZACHARY ROOT: Please do the cereal challenge and donate money to Usher.

MICHELLE CHARLESWORTH (VOICEOVER): His cereal challenge is to raise money to cure what he has, Usher 1F. He is losing his sight because of it.

RACHEL ROOT: Zachary has Usher syndrome, which is the leading cause of deaf-blindness. So he was born deaf. But he has the cochlear implants, so he can hear.

He was born with night blindness, and he is gradually losing his vision. It starts with the periphery. And then the cells die, makes tunnel vision, until there's total darkness

- Jared Root, I accept your Usher 1F cereal challenge.

MICHELLE CHARLESWORTH (VOICEOVER): The cereal challenge has you wear a blindfold and make a bowl of cereal. Good luck. And to think about Zachary and what Usher 1F brings on.

ZACHARY ROOT: Please help!

MICHELLE CHARLESWORTH: Zachary's family has only been doing this for 10 days and already the response has been amazing. People are spilling cereal and milk everywhere.

MICHELLE CHARLESWORTH (VOICEOVER): So far, 200 people have done this. And already, they've raised $50,000.

RACHEL ROOT: You know, it breaks our heart. It's just hard to imagine that your perfect little boy, who loves LEGOs, and loves life, and loves seeing, and loves art, one day might not be able to see. And it's just really, really scary for us.

MICHELLE CHARLESWORTH (VOICEOVER): But if that is heartbreaking, this catching on and fueling research at 8 labs around the world fills their heart. He is their world. They want to cure Zachary, and wipe out Usher 1F.

JARED ROOT: We want him to have as much of a normal life as any parent could wish for.

MICHELLE CHARLESWORTH (VOICEOVER): To help please, go to usher1f.org.