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Local 'angel' helps boy with rare disease make his appointments in Philadelphia

Norien's doctor is in Philadelphia, and is one of the only doctors would be able to help Norien eventually be able to stand; and expense Tess said her family could no longer afford, but, lucky for them they found out about "Angel Flight East." (Photo provided by the Jones family)

LYNCHBURG, Va. (WSET) -- A rare congenital disease has changed the lives of one Lynchburg family, costing them thousands in medical bills.

But, they said thanks to an "angel" they've been able to do more.

Norien Jones looks like your average two-year-old, he's always on the move, but it's the way he moves that's a little bit different.

"The name of the condition is Arthrogryposis multiplex congenital but we just say Arthrogryposis or AMC," said Tess Jones, Norien's mother.

Norien was born with the condition.

Arthrogryposis is a rare congenital disease that causes weakness in the limbs, making it nearly impossible for him to walk during his lifetime.

"When we first found out that I was pregnant we already had our daughter who is severely autistic and we thought that this was going to be our average child," said Tess.

But they knew from his ultrasound pictures he would be a fighter.

"You would think that it would get us down, but he just keeps going," Tess added.

She said his condition does keep them busy, as he has doctor's appointments a few times a week.

Norien's doctor is in Philadelphia, and is one of the only doctors would be able to help Norien eventually be able to stand; and expense Tess said her family could no longer afford.

But, lucky for them they found out about "Angel Flight East."

"We wouldn't be able to get back and forth if it weren't for angel flight East," Tess said.

Angel flight is a program that helps those in need get to their appointments and the Jones family took their first flight with TRBC pastor, Jonathan Falwell last week.

"It's stressful but I keep going because I know I have to be strong for Norie. Like if he can be strong and go through all of the surgeries and all of the pain and the tears, the least that I can do is be strong for him," Tess said.

The Jones family says that they wanted to share their story to raise awareness about Norien's condition because Arthrogryposis affects 1 in 3,000 children.

They say they know their son is a fighter and they believe he can do anything.

There is a GoFundMe page for the Jones family and little Norien, if you would like to donate, you can click here.

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