This brave girl has had over THIRTY surgeries since being born with a rare condition that has limited her movements and caused her face to droop – but she isn’t letting it stand in her way and has even learnt to play the piano at just six years old.
Social media influencer Grace Novacheck (14) from Texas, USA, was born with a rare condition known as Escobar’s Syndrome – a genetic condition which affects a person’s joints, causing them to lack a range of motion due to them becoming overwhelmingly tight. Both Grace’s parents, Sunny (48) and Marcus Novacheck (47) are likely passive carriers of the gene, but Grace is the only one affected in her family.
Girl with rare condition did not hit milestones until very late
After Grace was born in August 2006, she was placed into the neonatal intensive care unit (NICU) for nearly three weeks, due to doctors being concerned about her viability. However, she wasn’t diagnosed with the condition until the day she was discharged, when they visited an orthopaedic surgeon.
Due to her condition, Grace’s physical development has been stunted and she didn’t hit her milestones until very late on. She didn’t begin crawling until she was almost one-year-old and only started walking at three-years-old. Grace is also petite in height at just four-foot-six-inches – but she has learned how to adapt and become more resilient each day.
The rare condition caused Grace to have her first surgery at a very young age
At six-months-old, Grace had her first surgery which was a mandibular distraction – a method used to increase the length of the jaw bone – as she was born with a very small jaw. As she was so young, it was an in-depth surgery which included cutting her jawline and inserting a lengthening device.
Since then, she has had 32 further surgeries which have included two sets of fixators being placed on each leg to help straighten them, a cleft palate repair at 18-months-old and most recently, a spine fusion to help treat scoliosis – curvature of the spine. She has also had her thumb released on her right hand to help relieve some tightness and a tracheotomy, which helped open up her airways.
Grace’s parents believe her most challenging surgery was her first, as it kept her in hospital for over three weeks and post-surgery, they had to continually turn the screws which were protruding out from her neck every eight hours.
She also has a YouTube channel where she spreads awareness for her condition.
Despite this, Grace is an avid piano player which she started at just six-years-old and also enjoys playing the cello and guitar, as well as participating in volleyball. She also has a YouTube channel where she spreads awareness for her condition.
Luckily, most of the comments received have been very supportive and complimentary such as,‘You’re so beautiful’ and ‘Wow, this is amazing’ – but there have been a few trolls who have commented ‘You’re ugly’ and ‘Your appearance is hideous.’
“During the first trimester of Sunny’s pregnancy, it was identified that Grace had a very small jaw and that she wasn’t moving much,” said Marcus. “During the third trimester, we expected her to be incredibly active like most babies – but Grace was rather docile and essentially curled up into a tight little ball.
“Whilst she wasn’t diagnosed during pregnancy, doctors were concerned about her viability, so once she was delivered via c-section she was placed into the NICU for two-and-a-half-weeks where she was visited by specialists and students who would observe her.
“We felt at times frustrated as it seemed like she was a science project, so as soon as she was discharged we took her to an orthopaedic surgeon’s office who diagnosed her right away with Escobar’s Syndrome.
“Although this condition is genetic, no-one else in our family has physical symptoms. Myself and my wife were both tested and it’s likely that we are passive carriers, which given our different ethnicities, the odds of us both being carriers is extremely rare.
“A lot of her medical bills haven’t been covered by insurance, as due to the small number of Escobar patients and even fewer studies on treatment, many of her procedures were deemed ‘experimental’ or ‘unproven’ and for a young family, that has been a huge financial burden.
“Grace will still need surgeries in the future, such as another mandibular distraction for her jaw and orthopaedic surgeries on her legs – but to date, we have spent well into six figures on her medical care.”
Parents worry about Grace’s future with the rare condition
Marcus and Sunny worry daily about their daughter, particularly as she is getting older, such as about her being able to live by herself, her physical development as she reaches womanhood and her ability to find a career that fits her abilities.
“We started a YouTube channel around two years ago with the purpose to spread awareness and joy – we try to educate, tell stories that demonstrate the struggles that most are unaware of and try to make the world better.
“I don’t think it’s really sunk in yet that she has nearly nine-thousand-subscribers and thousands of viewers on each video and I don’t think she recognises the impact she’s had on people either.”
“As long as we stay true to the message of kindness, awareness and making the world better, we are generally fine with its influence and the vast majority of comments are really supportive.