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.
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.
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.
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.
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.
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.
– 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.
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.
“Infuriatingly humble web fan. Writer. Alcohol geek. Passionate explorer. Evil problem solver. Incurable zombie expert.”