Lauren Sharaby shares her story

Unlike most children, I was unable to commit to dance classes, gymnastic lessons, or the cheerleading squad. Instead, I was committed to being a patient. 16 years ago, my parents and I left our home at 5am for my first major surgery at NYU. I don’t remember feeling nervous until the night before, when my cousin and closest childhood friend drove me home. It was almost like a final goodbye, though I had no idea what was to come. I thought I was getting my nose done, when really, I was about to get my entire face reconstructed. I found that out days later, when I was extubated and out of the sedation haze. When I was born, doctors diagnosed me with a craniofacial ab-normality known as Crouzon Syndrome. Síndrome de Crouzon is a genetic disorder on chromosome 10 that may be inherited or, as in my case, occurs spontaneously, affecting 1/60,000 births in the US. Although presently incurable, medical treatment for Crouzon patients focuses on managing symptoms and surgically correct-ing deformities. I have visited the New York University Medical Center seemingly countless times, and I have undergone at least ten major surgeries: frontal bone advancements, bone grafts, cranial vault re-modeling to enable my brain to grow, and mid-face advancements in order to correct breathing. Though there were times I thought I’d never live a normal life, I managed to make it through high school, graduated from college with a Bachelor degree in Psychology, and went on to get my Masters of Science degree in Child Life—quite the accomplishments considering the doctors in the delivery room told my parents that their child might not make it to her first birthday.

Having undergone many major surgeries from the time I was three weeks old, I constantly felt as if my entire life was preoccupied with hospitals, intimidating machines and doctors’ visits. Therefore, I know that “it takes more than medicine to make sick children well.” I chose my career path with that in mind and am proud to say that I am a Certified Child Life Specialist, working with chronically ill children and their families in the Pediatric Hematology/Oncology Unit at Stony Brook Children’s Hospital to help them overcome life’s most challenging events.

In my experience, I have noticed that most people see the dis-ability, and not the child. I have an advantage because I see the child first and the disability as an inner strength to expand and enrich creatively. Children can do amazing things when they believe in themselves and become confident. I was always hesitant to share my story, as I felt it was lacking that “happy ending” everyone anticipates when reading the last few pages of a book. But as I get older, I realize that although my happy ending might be different from that of my friends or family, it is there. I found purpose and meaning in life’s challenges and a way to use my experiences to empower small children fighting big battles.