Rathdrum girl with rare medical condition inspiring others with - Spokane, North Idaho News & Weather KHQ.com

Rathdrum girl with rare medical condition inspiring others with Muddy Puddle Challenge

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RATHDRUM, Idaho -

Five-year-old Harper Pursley loves to play and she doesn’t mind getting a little muddy.

Even though she may ruin her favorite pair of pants, it’s all just for fun.

But in the fall, life for the Pursley family took an unexpected turn.

“We knew something was wrong but we had no idea what so in October she had a seizure, we ended up going to KMC and I told them we kind of had an idea that it may be ROHHAD Syndrome but we didn't know for sure,” Chelsea Pursley, Harper’s mom said.

“She looked at Harper labs and her oxygen levels and everything and she immediately was like 'you need to go to Seattle'."

The Pursleys were taken by Life Flight helicopter to Seattle Children’s Hospital and stayed there for a week.

They would find out Harper has ROHHAD Syndrome.

“This disease is so rare with 75 people in the entire world diagnosed with it,” Chelsea said.

ROHHAD Syndrome affects the nervous system and causes rapid weight gain, breathing difficulties and other problems.

Harper has a breathing machine in her room, which is monitored closely by Chelsea and her husband.

You would think that with all that’s happened to the Harper she’d be down, but in fact that’s the opposite, and her and her family embrace life to the fullest.

“Now talk about puddles!” Harper said during our interview.

A Scottish boy who has ROHHAD Syndrome helped inspire the “Muddy Puddle Challenge.”

He asked for help from the Avengers and Ironman himself, Robert Downey Jr, strutted his stuff in the mud while dancing to Van Halen’s classic song “Jump.”

Harper herself has inspired others to get dirty.

The next time you see a muddy puddle, you might as well jump.

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