South Windsor, Connecticut, United States
Charity: SHIFT Scoliosis
Medical Condition: Scoliosis
Medical Therapy: Spinal Fusion
Diagnosed with scoliosis at the age of 11, Sami’s dream of swimming at the Olympics abruptly ended. At 13, she could she no longer swim. Even standing became extremely difficult after just a few minutes. In 2012, after her spinal fusion surgery corrected the curve in her spine, then 15-year-old Sami turned her passion and newfound physical freedom into SHIFT Scoliosis, an organization she created to provide screenings and support for all people with spinal conditions.
"I was born with a rare genetic condition, Ehlers-Danlos Syndrome. This caused me to suffer from a debilitating and very progressive form of scoliosis. I was diagnosed with scoliosis at age 11. At that time I was an extremely competitive swimmer. Over the next couple of years my scoliosis progressed rapidly and by age 13, I could no longer swim.
"My scoliosis caused me to have constant pain, diminished breathing capacity, severe sleep apnea and hypoxemia, as well as neurological problems. I was put into a hard, plastic brace which I wore 23 hours a day, every day, for a year-and-a-half. I relied on machines to breathe at night. As my condition progressed, I felt as though my childhood was slipping away.
"In 2012, I underwent spinal fusion surgery to correct my then 60-degree scoliotic curve. My spine is now fused from thoracic level two to lumbar level four. The spinal fusion instrumentation that is holding my spine straight includes two rods and seventeen screws. Today, I can breathe and stand for as long as I wish. Physically, I am free to live my life.
"After my spinal fusion surgery in 2012, I became very passionate about helping others with scoliosis and related conditions. I created SHIFT Scoliosis to fill great needs in the scoliosis community – the need for more information, support and resources. Scoliosis issues need to be brought into the light. Stigmas need to be bashed. Screenings need to take place. Children needing medical care should get it regardless of their wealth. My new back helps me do this work. It shows others that they can have hope too and inspires them to join in this movement to change how the world sees scoliosis."
"Embrace what’s difficult."
"There were many days on my journey with progressive scoliosis when I felt as if all was going against me – countless medical appointments; the ongoing progression and deterioration of my body; and the pain of being stared at, laughed at, and made fun of. It was overwhelming and hard to deal with as a younger teen.
"I want everyone with a spinal deformity, with any medical condition, to feel validated and to know how perfect, strong and brave they are. I want them to know they are not alone, and to never give up."
SHIFT Scoliosis provides education, screenings and support to promote early identification and treatment of scoliosis for all people with complex spinal conditions worldwide. The organization also works to eliminate global stigmas around scoliosis.