September 26, 2021

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Grace has worked (14) 33 times

Grace has worked (14) 33 times

Live in Texas girl who became a star on social media. She is only 137 cm tall, and her body is working against her. But Grace Novacek (14 years old) still looked bright in life.

The 14-year-old was born with a rare genetic condition. Without knowing it, both mother Sunny (48 years old) and father Markus Novacek (47 years old) were both carriers of the gene. But no one else in their family was affected.

All bell joints are solid. Father Marcus says: Everything from the neck to the hips to the fingers and toes.

On vacation: the family tries to live as normally as possible.  Here's dad Marcus, little sister Iris (8), Grace and mom Sunny.  Photo: Media Drum World
On vacation: The family tries to live as normally as possible. Here’s dad Marcus, little sister Iris (8), Grace and mom Sunny. Photo: Media Drum World
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rare diagnosis

Even when Grace was in her mother’s tummy, it was observed that she was moving much less than usual. When Grace was born, she was immediately placed in the intensive care unit because she was very weak.

Just three weeks later she was diagnosed with Escobar syndrome. At six months old, she underwent surgery for the first time. Then the jawbones were lengthened. Since then, she has undergone 32 surgeries again.

Newborns: Grace ended up in the intensive care unit when she was born.  Only three weeks later she received the diagnosis.  Photo: Media Drum World
New Baby: Grace ended up in the intensive care unit when she was born. Only three weeks later she received the diagnosis. Photo: Media Drum World
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But the time after the first was even tougher – at least for the parents.

– Every eight hours, Sunny and I had to twist the screws protruding from her neck, so that the jawbones lengthened. It was a rough time, but we had to do it — to help Grace, says Marcus.

rare: Versavia (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_L Liquid_Love. Reporter: Ingebjørg Iversen
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You must pay yourself

During the 33 surgeries she underwent, doctors stretched her legs several times, closed her cleft palate and reduced the curvature of the spine.

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The family had health insurance, but had to pay a lot because the insurance company thought it was an experimental treatment.

So far, the parents have spent nearly a million kroner – and they know it doesn’t end here.

33 Operations: So far, the Grace family has spent nearly a million kroner, but it won't stop there.  Photo: Media Drum World
33 operations: To date, the Grace family has spent almost a million kroner, but it is not going to stop there. Photo: Media Drum World
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playing piano

But grace is fine. She started taking piano lessons at the age of six, and she loves it. She also loves to play the cello and guitar, as well as to draw.

The syndrome does not make my personality different from others, as it says on YouTube.

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

Loves Music: Grace loves to play different instruments such as cello and guitar.  Photo: Media Drum World
Likes music: Grace loves to play different 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’ll take a year off from school — to complete most of the surgeries needed to prepare her for adulthood.

Then you will start at university.

foreign body: In the series “Body Bizarre” we meet people with very mysterious and special diseases. Video: Red Carpet / Dplay
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Worry

But parents are worried about their daughter’s future. Can she live alone, and will she find someone she loves?

We are not only concerned about her physical health, but also her mental health – because her life will be very different from the lives of others. Just finding friends can be difficult, Marcus says.

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Anxiety: Grace's parents make no secret of their concern for their daughter's health, both mentally and physically.  Photo: Media Drum World
Worry: Grace’s parents do not hide their concern for their daughter’s health, both mentally and physically. Photo: Media Drum World
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