It's one thing to enter adolescence being shy and feeling awkward about how you look. But it was much harder than that for Sami Petersen. Once healthy and a top swimmer, she found she couldn't hold up a book to read or brush her own hair. She wore a back brace constantly and was in continual pain. But it was how she looked that made it really tough. Her body—the curve of her back—was deteriorating. Diagnosed at age 11 with scoliosis—an abnormal curvature of the spine that affects 2-3% of the population—she could do little more than watch her own deformation.
In August 2012, Sami was scheduled for surgery; her mother asked her if she could take a picture of her back, figuring that, for better or worse, it would never be the same and Sami might someday need a record of "before." Sami agreed. Her mother reports what happened:
"After the improvised photo shoot in our living room, I showed her the pictures. She stared for a while and said, 'This is beautiful. I never realized I was beautiful.' It was at that moment that she blossomed and took a leap into the unknown. . . . She took that photograph and posted it on Facebook and created a blog. She risked her social standing and so much more by showing her peers and the entire world what severe scoliosis looks like."
Sami then underwent spinal fusion surgery: two steel rods, 17 screws, a bone graft, and great work by the surgeon and hospital staff. Her spine was stabilized and straight. She was "normal" again.
That could have been the end of the story. Instead, Sami turned her attention to launching a nonprofit organization, SHIFT Scoliosis, to help those who aren't as lucky as she's been. Her mission is to provide information and support to anyone affected by scoliosis, including whole families of scoliosis patients. She delivers some of this information and support through a parent-education campaign; some through school screenings; and some through her notices of community service opportunities.
Sami's mother describes her daughter's dedication, saying, "She has forgone paid jobs, lost sleep, missed time with friends, skipped recreation activities, and has worked every day of the week making sure that the people she is trying to help have the information and support they need."
Sami publishes information about scoliosis and biographies of patients every week. Her "Wrapped with Love" program gives handmade blankets to children and adults going through scoliosis surgery. "The Scoliometer Project" gives volunteers an opportunity to raise money for schools to buy scoliometers (screening tools to detect curvatures early). "Snuggles for Scoliosis" is her program to provide stuffed animals—PillowPets—to impoverished families facing scoliosis surgery.
In just over a year, she's raised more than $13,000 and provided resources for children with scoliosis in more than 50 countries.
Sami's courage in exposing her own scoliosis to the world was just the beginning. Through that courage and her continuing, unpaid work, she's brought solace to thousands of patients, their friends, and their family members around the world.
Sami says now, "I have no plans to stop SHIFT, ever. I will continue to work hard to help my project grow and prosper. When I first started SHIFT, I wanted to help everyone, everywhere, all at once. The most difficult part has been realizing that this will take time, but this is my passion and I am up for the challenge!"