Meet Grace Novacheck
One of the most precious gifts is our health. Functioning joints are crucial for every step and every movement. But what if the simplest of movements took three times the effort? Escobar Syndrome is a very rare congenital disorder that is generally diagnosed in utero (before the baby is born) and hinders joint development and limits mobility. It’s so rare that there are less than 1,000 confirmed cases globally. But it isn’t the disease that makes thirteen-year-old Grace Novacheck so unique, it’s her remarkable attitude. Living with Escobar Syndrome Throughout Grace’s thirteen years, she has undergone thirty-three surgeries, with twenty-five of them occurring before the age of five. Many of her surgeries temporarily improve her joints to allow a greater level of functionality, but her genetic code will try and undo the surgery’s progress as she grows. “My doctor said when I was a baby that we had two choices,” says Grace. “One of them was we could amputate my legs which my parents were like ‘No’. The other [choice] was because my legs were bent under me, we could straighten them out.” Even though there is no cure for Escobar Syndrome, these surgical procedures improve the quality of life for those living with the disorder. Thankfully, the condition does not worsen nor does it prevent a normal life expectancy. Even though Grace will continue to need more surgeries to give her increased mobility until she is fully grown, she doesn’t let that get her down. “She has a lot of challenges, but she thrives. Grace has an amazing spirit,” says her father Marcus Novacheck. In order to straighten her knee, medical devices called external fixators are used. These are placed by drilling directly into the leg bones. These external devices are then twisted like tinker toys, little by little, as they hold her leg in place so that it heals straight. This lengthy process takes months. “No matter how hard I try, I cannot bend my left leg,” says Grace.
Even though Grace’s life doesn’t fit the criteria for “normal”, Grace’s enthusiasm and joy for life are so infectious that it ultimately affects everyone she meets. Grace is not defined by Escobar Syndrome. She has learned to overcome her disability and thrive. Grace is an exceptional pianist beyond her years. She has even played sports including volleyball, soccer, and horseback riding. “I want people to see a happy, faithful, kind, hardworking, and smart thirteen-year-old girl,” says Grace. “My body is different, but it doesn’t make me, my soul, or my personality different.” A year ago, Grace began her own YouTube channel (Grace Nova) to show the world the lessons she’s learning in hopes it will inspire others. Her videos include such topics as “Playing Sports with a Disability”, “How Well Do My Friends Know Me?” and “My Sleep Study.” She also shares videos on her latest surgeries and family updates. Grace is incredibly resilient and optimistic about what she can accomplish in the future. “Some of the things that are hard for me are walking long distances, trying to run, and doing things fast,” says Grace. “But I can do other things.” Grace plans to eventually become a doctor and use her own experiences to help others. You are amazing Grace, simply amazing.