Sami Petersen’s parents tried their best to comfort her. Diagnosed with a progressive form of scoliosis, the once lighthearted sixth grader was struggling to hold back her tears.
“I told her she was smart, that she was beautiful and that everything would be okay,” her mother, Jennie Petersen, recalled for O&P News. But with little support or medical resources, that promise seemed tough to keep.
Diagnosed with scoliosis
It was a Friday afternoon when Jennie read the screening results from Sami’s school.
“We could not talk to anyone until Monday,” she said. “So, we spent the weekend on Google.”
Neither of the two knew much about scoliosis at the time. “We just knew it was not something that you wanted,” Jennie said.
When Sami returned to school the next week, she hid the condition from her peers.
“I did not tell anyone because [scoliosis] was stigmatized,” Sami told O&P News. “There was a huge push for physical perfection…so I became really self-conscious.”
For a while, she got by. Pain medicine and physical therapy allowed her to continue the things she loved. But as the scoliosis progressed, those activities grew harder.
“Even brushing my hair became a challenge,” she said.
By 15 years old, her spine curved to 60° and normal activities became nearly impossible. The condition was threatening more permanent deformities and a shortened lifespan death if not treated. But help would soon come. In 2012, Sami visited a specialist at the New York Presbyterian Columbia Children’s hospital. She was diagnosed with Ehlers-Danlos syndrome, an underlying genetic disorder causing her scoliosis to be severe. The condition was treatable, but it would require complex spinal fusion surgery.
‘A picture says a thousand words’
Jennie did “the typical parent things” before her daughter went into surgery. She gave her a hug, told her to stay strong and took a picture of her curved spine.
Surgeons fused 15 of Sami’s vertebrae from T2–L4 using two steel rods, 17 screws and a bone graft. In spite of brief respiratory issues and 6 days in intensive care, her curve was corrected to 9°.
Source: Zach Harrison Photography
“By about 3 weeks post-op, I was able to do most things that had not been able to do in years,” Sami said. “I could go on walks, pick up my little sisters…and I could even brush my hair.
“Before the surgery, I wanted to hide my back. But after looking at the picture my mom had taken, I decided to do the opposite.”
“The picture really turned it around for us,” Jennie said. “I wanted Sami to see that she was beautiful regardless of whether she was perfect or not…and I guess it did the trick.”
Sami posted the photo on her Facebook account and “the response was overwhelming,” she said. “I began receiving messages from people all over the world asking for support, asking for help.
“I made a blog to help others by sharing my story, but I wanted to do more. I wanted the stigma around scoliosis to be changed.”
Then SHIFT Scoliosis was born. Sami recruited friends, family and volunteers to build the nonprofit organization. Its mission is to eliminate the challenges of orthopedic conditions through education, outreach and connections to medical care.
“At first I just wanted to help one child get diagnosed early,” Sami said. “Then I realized with hard work and dedication, we could make an impact around the world.”
Reaching home and abroad
About 5 million to 7 million people in the United States have some form of scoliosis, according to the American Chiropractic Association. In developing nations, many with the disease will never receive care.
SHIFT is trying to change that. Its “Seeing the Curve” program is bringing together medical professionals and youth volunteers to conduct mass scoliosis screenings for those without access. It also provides the tools for individuals to establish self-sustainable screening clinics in their local communities.
Through its “Scoliometer Project,” SHIFT offers devices to measure vertebral rotation and identify the presence of a spinal curve, further enhancing the screening process. The project has connected 102 positive screenings to medical care.
Its other big program is the “Purple Paintbrush”. It is a therapeutic art program for children and families who are living with medical, social and emotional challenges. It is supported by youth mentors that visit schools, youth groups, homeless shelters and hospitals.
“We want to give kids a chance to de-stress and defocus on the negative things happening in their lives,” Sami said.
SHIFT also offers the “Wrapped with Love,” “Snuggles for Scoliosis” and “Worry Stone Care” projects, which provide handmade blankets, stuffed animals and unique stones to disadvantaged scoliosis patients around the United States, reminding them that there is a larger community supporting their journey, Sami said.
Since its inception, SHIFT had grown from a small awareness initiative into an organization that reaches thousands of people across the United States and abroad.
“Our goal is to eventually ensure that no child suffers from untreated scoliosis,” Sami said. “We have big goals for the future and are working to expand even more.”
Sami is 17 years old, but has dedicated her life to helping others. She and her mother have been traveling the United States to educate parents, nurses and orthopedists about their journey.
“I feel extremely honored to help,” Sami said. “The piece of advice I often give is do not give up, keep trying. Eventually you will find the right treatment or the right doctor and you will overcome this.
“It was not until I went through it myself that a really got a better understanding of that,” she said. “But looking back, I would not have it any other way.” – by Shawn M. Carter
American Chiropractic Association. Available at www.acatoday.org. Accessed Apr. 27, 2015.
SHIFT Scoliosis. Available at www.shiftscoliosis.org. Accessed Apr. 27, 2015.
Disclosure: Petersen reports no relevant financial disclosures.