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Washington girl with rare genetic condition hopes to foster acceptance, help others

The 9-year-old is one of only 20 people in the United States currently battling the disease.

EDMONDS, Wash. — In the game of life, Harper Foy is not one to sit on the sidelines.

As she plays soccer with her mother, Angie, at an Edmonds park, she's asked if she is competitive.

"Yes!" Foy responded with a jump. "I like to win. I like to win everything."

Foy is now in a battle for her life. She was born with a condition called harlequin ichthyosis.

It's a genetic disorder that turns the skin all over Harper's body thick and orange. She spent her first three months of life in the NICU. Foy was given a 50-50 chance to live.

The condition is painful and incurable.

The second grader gets up at 6:30 every morning to begin a daily regimen that includes hour-long baths three times a day to keep her skin from cracking.

An infection could kill the 9-year-old, but that does not phase little Foy.

"I can do this every day if I have to, and I do," Foy said. "So, I can do this. Sometimes I don't want to, but I have to."

Since the year 1750, there have only been about 200 confirmed cases of the condition, worldwide.

Harper is believed to be one of just 20 people currently living with the disease in the United States, but she is not just living.

She's thriving.

"I can do anything, just like everyone else," Foy said. "I play sports, go outside. I do everything kids can do."

It would be easy for a child like Foy to shrink and try not to be noticed, but this kid is all about being seen.

Foy promotes her own brand of sassy positivity to her 52,000 Instagram followers. 

She has even come up with her own catchphrase.

"Not me, not today," Foy smiled, flashing a peace sign.

It's a thumb in the eye to people who might doubt or even mock her.

"When people stare, I don't care," Foy said. 

Foy sells merch with her motto in her online store. The proceeds go to Seattle Children's. 

In September, Foy strutted the catwalk in New York City for the Runway of Dreams Foundation's campaign for inclusion that raises awareness for people with disabilities. 

She is a little girl born with thick skin, and she uses it as her superpower.

"All the stuff she has to endure, all the showers and baths," said Angie, Foy's mother. "They're really hard on her. They hurt her. They're not comfortable. I am so proud of her. I couldn't be more proud of her."

As she kicks the ball tirelessly with her mom, Foy is living proof that you can't lose the game if you never give up. 

"Whatever it is, just keep doing it," Foy said. "Once you do it, you can keep on doing it. If you can't do it once, twice, or three times, you just keep on trying."

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