Courageous Kid Grace Novacheck Raises Awareness About Escobar Syndrome

13-year-old Grace Novacheck loves playing the piano. She's been playing about half of her young life and her skill level is amazing.

"She's really good at it," Grace's mom Sunny Novacheck said. "She thrives at it. She enjoys it. She has a wonderful musicality to her that comes natural. When she's playing, you can tell she's really enjoying herself."

"It's one thing I can do and I can do just like other kids and I can be really good at it," Grace said.

But Grace is a little different from other kids. She has what's called Escobar syndrome.

"Every joint on her body lacks mobility," Grace's father Marcus Novacheck said. "Her jaw, her neck, her arm, shoulders, hands, legs, everything."

Grace realizes this causes her some challenges.

"So physically I cannot walk as fast," Grace said. "I can't run as fast."

She has had numerous surgeries to help with some of her physical limitations.

"I'm 13-years-old and I've had 32 surgeries," Grace said. "When I was 5-years-old, I had already had 25 of them which is a scary thought."

But Grace doesn't want people to just see her as a teen with Escobar Syndrome.

"I want them to see a happy, faithful, kind, hardworking and smart 13-year-old girl," Grace said.

That's one reason she's created her own YouTube channel called Grace Nova. She's documenting everything from family vacations to her love of cooking.

"I think I wanted to show people that yeah I have Escobar that makes my body different, but it doesn't make me, my soul, my personality different," Grace said. "I'm just like other people."

"I think that is one of the messages we've always tried to engrain in her that Escobar is part of who she is but it's not who she is," her father Marcus Novacheck said.

Grace is a courageous kid teaching people to never judge a book by its cover.

"If they've never heard me before they might think, 'oh yea she can play like I don't know Twinkle Twinkle Little Star,'" Grace said. "But when they see me actually play they are like, 'Oh my goodness you can really play."

Grace says after having so many surgeries she now would like to be a doctor that is honest with young patients. She says she'll let them know there may be some pain involved in their procedures, but they can overcome it.

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