Upstate mother and daughter crusade for PANS Awareness - FOX Carolina 21

Upstate mother and daughter crusade for PANS Awareness

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Fundraiser for teen with PANS (Source: Family) Fundraiser for teen with PANS (Source: Family)
EASLEY, SC (FOX Carolina) -

Thirteen-year-old Paris's mother, Amelia Pena, said her daughter loves to play violin, soccer and is an all around loving child. Recently, however, Paris hasn't been able to do any of that because of a disease that is very rarely talked about. 

"When you have a child that played for Gettys Middle school in violin and you no longer get to go to concerts, you no longer get to go sit in the bleachers and yell her name during a soccer game. We lived and breathed each other‘s life, and to see hers come to a screeching halt, it’s almost unbearable," Pena said. 

Pena said her daughter had symptoms of the flu. When she checked on Paris and asked if she was okay, her response seemed more than "off."

"She said 'I'm okay, I'm okay, I'm okay.' It was almost like talking to a child that I used to know, but many many years ago...a child that was learning how to speak again," said Pena.

Pena took her daughter to GHS and Paris was put under observation for several days.

"They did a spinal tap, MRIs, Cat scans...everything came back negative. It didn't seem right. Something's wrong, something's not right," Pena said. 

More than  a week later, Amelia said she saw Paris's hands begin to twitch. There was ticking, obsessive behaviors, anxiety - all symptoms she started seeing in her daughter that hadn't been there before.

"I told them you have a degree in medicine, I have a degree in mom and I know my daughter and I know who she is and who she is right now is not the girl that I used to know," Pena said.

Paris was diagnosed with PANS, pediatric Acute Nuero psychiatric syndrome. It causes inflammation of the brain. 

"Her body gets so sore from ticking, and her hands, if she gets upset, she rubs them so hard to where she'll have bruises, on her hands and she can't stop," Pena said. "It's our every day." 

An "every day" she wants to change for other South Carolina kids like Paris.  

"PANS children deserve treatment in states," said Pena. "If we can't get the clinic right now, let's get our educators educated. Let's raise awareness throughout our schools."

The mother daughter duo are calling for more treatment, resources and education in the Upstate. 

"This is a true superhero. She doesn't care about helping herself, she cares about helping others. She knows that right now she's going to be the learning experience and she's okay with that. I'm sure she doesn't mind being a learning experience if she knows the end result is going to be a victory," Pena said. 

Pena wants to thank all of the surrounding schools for their support, especially East End Elementary, Getty's Middle and Easley High School. Pena's next move is to work with legislators to bring more treatment and resources to the Upstate. 

There will be a benefit in Paris's honor and to raise awareness for PANS on Sunday, May 6 at the Hide Out at from 3-10 p.m.

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