Grace (14) operated 33 times

In Texas lives a girl who has become a star on social media. She is only 137 centimeters tall, and her body is working against her. But Grace Novacheck (14) still looks bright on life.

– Our girl will always be tiny

The 14-year-old was born with a rare, hereditary condition. Without even knowing it, both mom Sunny (48) and dad Marcus Novacheck (47) were carriers of the gene. But no one else in their families is affected.

– All Grace’s joints are stiff. Everything from the neck to the hips to the fingers and toes, says dad Marcus.

ON HOLIDAY: The family tries to live as normally as they can. Here are dad Marcus, little sister Iris (8), Grace and mom Sunny. Photo: Media Drum World — **ON HOLIDAY:** The family tries to live as normally as they can. Here are dad Marcus, little sister Iris (8), Grace and mom Sunny. Photo: Media Drum World
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Rare diagnosis

Even while Grace was in her mother’s womb, it was noticed that she moved much less than usual. When Grace came into the world, she was immediately placed in the intensive care unit because she was so limp.

Only three weeks later was she diagnosed with Escobar’s syndrome. At six months old, she underwent surgery for the first time. Then the jawbones were lengthened. Since then, she has been operated on a further 32 times.

NEWBORN: Grace Ended up right at the intensive care unit when she was born. Only three weeks later did she receive the diagnosis. Photo: Media Drum World — **NEWBORN:** Grace ended up right at the intensive care unit when she was born. Only three weeks later did she receive the diagnosis. Photo: Media Drum World
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But the time after the first was toughest – at least for the parents.

– Every eight hours, Sunny and I had to turn the screws that protruded from her neck, so that the jawbones would get longer and longer. It was a cruel period, but we had to do it – to help Grace, says Marcus.

RARE: Virsaviya (11), who lives in Florida with her family, was born with a rare disease. Video: @legendari_love / @virsaviya_art_heart / @little_prince_ervin_joseph / @legenDari_Liquid_Love. Reporter: Ingebjørg Iversen
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Must pay yourself

During the 33 surgeries she has undergone, the doctors have stretched her legs several times, they have closed a cleft palate and reduced the curvature of the spine.

– Now our boy needs a new heart

The family has health insurance, but has had to pay a lot because the insurance company believes it is experimental treatment.

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So far, the parents have spent close to a million kroner – and they know that it does not end here.

33 OPERATIONS: Until now, Grace's family has spent close to a million kroner, but it will not stop there. Photo: Media Drum World — **33 OPERATIONS:** Until now, Grace’s family has spent close to a million kroner, but it will not stop there. Photo: Media Drum World
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Playing piano

But Grace is fine. She started taking piano lessons as a 6-year-old, and loves it. She also loves to play cello and guitar, as well as to draw.

– The syndrome does not make my personality different from others, she states on YouTube.

– A chance we were both willing to take

Together with her parents, Grace started a channel to spread awareness about the syndrome. She also has over 20,000 fans on TikTok.

LOVES MUSIC: Grace loves to play various instruments such as cello and guitar. Photo: Media Drum World — **LOVES MUSIC:** Grace loves to play various instruments such as cello and guitar. Photo: Media Drum World
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– Fortunately, most of the comments are supportive, says the father.

When she finishes high school, she will take a year off from school – to complete most of the surgeries needed to prepare her for adulthood.

Then she will start at the university.

BODY BIZARRE: In the series “Body Bizarre” we meet people with very special and mysterious diseases. Video: Red Carpet / Dplay
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Worried

But parents are worried about their daughter’s future. Can she manage to live on her own, and will she find someone to fall in love with?

– We are not only concerned for her physical health, but also for her mental – because her life will be so different from everyone else’s. Just finding friends can be challenging, says Marcus.