By Kate Moore @kitmoore

GRACE NOVACHECK, 13, from Texas, has undergone 33 major surgeries in her short life

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Videographer / director: Chris Sinclair

Producer:  Kate Moore

Editor: Thom Johnson

Grace has Escobar syndrome, a rare condition which causes joint contractures. 

This affects her jaw, neck, arms and legs.

Grace also suffers from scoliosis – where the spine is curved to one side, impacting her mobility.

Doctors were unable to diagnose Grace’s condition for the first month of her life.

Her dad Marcus told Truly that their family’s “journey has been very intense”.

“Grace’s childhood has been a series of ups and downs.

“Every time that we do something in the operating room her genetics want to reverse it.

“Her ankle at one point after she came out of the operating room was a 90-degree angle, and over time it's reversed.

“So now she has pointy feet, and that's part of the reason that she wears these braces to help give her stability.”

Living with her conditions has meant a childhood filled with hospital visits.

“I’ve had fixators on both my legs twice”, Grace explained.

“Those are where they take screws and they put them in your leg and twist them.”

She’s also had a spinal fusion, coronoidectomies, a cleft palate repair, plus a jaw distraction and jaw stretches.

Grace needs help with everyday tasks like getting dressed in the morning and putting her leg braces on.

However, Marcus has never let Grace’s condition get in the way of her achieving goals.

“I think the medical world doesn't want to set limitations, and quite frankly, I didn't want to hear them,” he said.

“We set our own limits.”

Grace has her own YouTube channel, where she gets to have her “own narrative” about living with a disability.

She also plays the piano, using her right hand for the melody and playing with one finger and knuckles on her more contorted left hand.

Marcus said that: “Grace has really embraced music”.

“Sports were often important in the family, and she felt a little bit left out."

But now, “music is hers.”

“There are some things she cannot do, but I'd rather focus on the things we can do."

Despite the breakthroughs in Grace’s life, she has experienced judgement from others.

 “One thing that really gets under my skin is when people stare”, she said.

“It's just really annoying and creepy.

“I would rather a person come up to me and say, ‘Hi, what's your name?’"

“There were a few instances of bullying,” Marcus added.

“It wasn't ever a child picking on her, it was more a lack of filter in their words.

“I would say on a regular basis, she does feel left out, it's hard for her to keep up.”

However, the family have tried to give Grace every opportunity possible.

“I’ve really adjusted my mindset over time that rather than saying, ‘she can't do this’, we say 'we're going to give it a shot'.”

This positive outlook has led to Grace playing in a local volleyball team, following her mother’s footsteps.

“Growing up, my mom played volleyball, and still does, I wanted to be like my mom”, Grace said.

They found a beginner’s league and she has been playing ever since.

“I'm very proud of Grace, she makes the most of her abilities”, Marcus added.

“When I see her out there competing, it really warms my heart.

“She's really brought us out of our shell and made us embrace life in a lot of ways, she's got an amazing spirit.”