Local boy fighting disease that only 100 in the world have

Mason is one of just 100 people in the world with Rohhad Syndrome.

A brave little boy has a rare condition that’s threatening his life. The disease affects less than 100 people worldwide. After a scary diagnosis nine years ago, he’s returned to intensive care, and his parents are speaking out to share his story.

Mason Byrom plays a competitive game of Gin Rummy with his grandpa in his room in the Pediatric Intensive Care Unit.

We first introduced you to Mason and his family back in 2009. Mason was born with ROHHAD Syndrome, a progressive disease, with no known cure. Usually, Mason breaths normally with a 24/7 ventillator. But, this week, his oxygen dropped extremely low. So, on Wednesday, he was admitted to children’s hospital. This is his fourth stay this year.

"We don't know whether we're going to get a call that something's happened and we have gotten that call," said Mason’s mom, Julie Byrom.

His family says part of the challenge of such a rare disease is living with the unknown, the unexpected.

"No matter what anything - anything happens to Mason, he's ready to go the next time, he'll push, the perseverance," Patricia Creek, Mason’s homebound teacher for the last year and a half, said.

No matter what happens, friends and family say Mason embodies perseverance.

"He's so smart. Me and my dad when he's helping me with my homework we always have to ask him and he's always like oh, that's so easy

because it's like fractions and stuff," said Cameron Byrom, Mason’ sister.

Mason’s mom, Julie, says their community of Webster and children’s hospital has rallied around her son.

"The kids in his school said, you know, they were you know inspired by his story,” she said. “And they would give and then their parents would match what the kids - would give their own money."

"I just want everyone to know that Mason Byrom was here - he was important - and children's hospital helped us realize that," said Mason’s dad, Larry Byrom.

Mason’s parents have started a GoFundMe page to purchase a wheelchair accessible van and a generator that keeps Mason’s ventilator running. The site has raised nearly $40,000, with an end goal of $50,000.

© 2017 KSDK-TV


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