In the first year of my life, I was diagnosed with a rare bone dysplasia which manifested itself in my spine. Later identified as Kyphoscoliosis Kozlowski type, I had a severe curve both in the lumbar and thoracic region of my spine creating an “S” shaped spine. The prognosis was uncertain and after much research, my parents entrusted my care to Dr. John Emans of Boston Children’s Hospital. Dr. Emans recommended bracing to help correct and prevent the curves from worsening. For the next 6 years of my life, I wore corset braces 18 hours a day until my torso was cast for 2 months before my first surgery at age 7.
At that time my family had relocated from NYC to Villanova, PA. Dr. Emans was entering retirement (or so he thought) and recommended transferring my care to Dr. Suken Shah, an orthopedic surgeon at DuPont Nemours Hospital in Wilmington, DE. Dr. Shah performed the 7-hour procedure of installing my first set of electromagnetic growing rods. I returned to 2nd grade just 3 weeks later and resumed a normal life. My second set of growing rods came at age 11 and my third, and final surgery, a spinal fusion, at age 14. To this day I still carry the burden of my scoliosis with frequent pain and soreness in my back, often exacerbated when I’ve endured too much physical activity. This said, I have learned to manage the pain through stretching, massages, and other forms of therapy notably, dry needling and cupping.
Inspired to Share
Given my lifetime journey of living with a severe scoliosis condition, I feel called to share my story in the hopes of inspiring, informing, and motivating children with a similar diagnosis to stay positive and trust the treatment process. From an embarrassed toddler uncomfortable in a brace to a young girl faced with three extensive procedures and all the physical, emotional, and mental tolls that accompany surgery, to a young adult with experience and perspective, I hope to inform and inspire young children diagnosed with congenital scoliosis that it does not define who they are, and the journey will make them stronger than they could ever imagine. As an ambassador for both “Setting Scoliosis Straight” and “The Pediatric Spine Foundation,” I am on a mission to continue on my scoliosis journey by now offering up my experience and perspective in the hopes of helping and encouraging others through their process.
The concept for children’s book: Riley with the Rods
Book Concept: In her memoir, Riley shares her journey from childhood to teenager living with congenital scoliosis. Riley was braced as a toddler, casted at a young child and operated on three times extensively to help lengthen and strengthen her spine. Through her story and trials of pain, fear and shame, Riley demonstrates unparalleled optimism and resilience. Her attitude and her smile become her trademark and logo for success and hashtags originate along the way; #Rileystrong #RileyResilient #Rileysmiley
Her story is meant to inspire and inform young children diagnosed with scoliosis that there is a path forward and it all begins with your attitude and mindset.
While every scoliosis journey is different, learnings are shared through one little girl’s experience. A 20-page word /picture book targeted at kids ages 5-8yrs old telling a story of life with scoliosis. From everyday experiences to scary procedures and anecdotes, and lots of laughs along the way! With a resounding theme of how keeping a positive attitude and rising above your challenges will help kids relate and feel inspired on their journey, Riley with the Rods will be sold on Amazon and in affiliated hospital gift shops.
Please stay tuned for the book release date!
Read more patient stories like this from around the world.
