NJ boy with rare genetic disorder starts blindfold cereal challenge

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Tuesday, February 23, 2021
8-year-old not letting rare genetic disorder rob his happiness
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Michelle Charlesworth reports on the challenge Zachary Root has started.

NORTH CALDWELL, New Jersey (WABC) -- Here's a challenge: Make a bowl of cereal blindfolded.

It's called the Cereal Challenge and it was started by an 8-year-old in New Jersey who wants to show people what he faces on a daily basis.

Zachary Root was born deaf and has Usher syndrome, which will eventually rob him of his vision.

However, his spirit outshines everything.

"Please do the cereal challenge and donate money to Usher," Root said.

His cereal challenge is aimed to raise money to cure what he has: Usher 1F. He is losing his eyesight because of it.

"Zachary has Usher syndrome which is the leading cause of deaf-blindness so he was born deaf and he's losing his sight, but he has the cochlear implants so he can hear" Root's mom Rachel said. "He has he was born with night blindness and he is gradually losing his vision."

The cereal challenge has the person wear a blindfold and make a bowl of cereal to think about Root and what Usher 1F brings on.

Root's family has only been doing this for about 10 days and already they've had a huge response - people are spilling cereal and milk all over the place.

So far 200 people have done the challenge and raised $50,000.

"It breaks our heart, it's hard to imagine that your perfect little boy who loves Legos, loves life and loves seeing, loves art, one day will not be able to see," his mom said. "It's just really scary for us. "

But if that is heartbreaking, the challenge catching on and funding research at eight labs around the world fills their heart.

They want to cure Zachary and wipe out Usher 1F.

"We want him to have as much of a normal life as any parent could wish for," Root's father Jared said.

To help please go to Usher1f.org.

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