Nicklas, 10, loves playing video games, joking and causing mischief with his friends. But he is also wise beyond his years, say his parents, Gary and Greta. That’s because he’s had to make a tough decision — not once, but twice.
A Complex Disorder
Nicklas — who first shared his story with KS95 for Kids in 2007 — was born with popliteal pterygium syndrome, an extremely rare condition that prevents him from walking the way most kids do. The syndrome’s hallmark is webbing on the back of the legs.
Shortly after his birth, Nicklas and his parents came to Gillette Children’s Specialty Healthcare. Nicklas had 11 surgeries before his first birthday. Although they helped, Nicklas could never straighten his legs. Both legs, especially the right one, caused him pain. He typically used a wheelchair, but dreamt of running with his classmates.
Nicklas’ Brave Decisions
In 2007, Nicklas’ orthopaedic surgeon at Gillette recommended replacing his right leg with a prosthetic. Without the surgery, Nicklas would have remained in a wheelchair and continued to experience constant discomfort.
He also have could developed scoliosis. But the final decision was up to him.
At only 9 years old, Nicklas made his first difficult decision — he asked doctors to amputate his right leg. The surgery was successful, and Nicklas was fitted with a prosthetic leg in December 2007. “It was a hard choice, but ultimately, the right one," says Gary.
Despite the efforts of Nicklas’ doctors, his remaining leg continued to get worse — often causing significant pain. That’s why, in September 2008, Nicklas chose to have his left leg, too, replaced with a prosthetic. (Most people with popliteal pterygium syndrome ultimately need to have both legs amputated.) “For Nicklas, surgery meant the end of something painful. It meant doing things he’s never done before,” says Greta.
Newfound Freedom
In December, Nicklas walked without pain for the first time. Gillette’s assistive technology specialists made two walking legs for Nicklas. They also created special running legs, C-shaped legs that make Nicklas much taller. With training, he’ll be able to run — and likely outrun — his classmates.
“Gillette has been wonderful,” says Greta. “They’ve spent hours making sure his new legs fit just right.” They’ve also become like family to Nicklas, whose new legs include tattooed faces of the prosthetists who created them.
Throughout the challenges and triumphs of the past two years, Nicklas has maintained a positive outlook and a contagious sense of humor. During his 2008 hospital stay, he sported a shirt reading, Dude, Where’s My Legs? He once told Greta that his biggest challenge “is probably getting motivated to finish my math homework.”
“Gillette has helped our son’s dream come true,” she says. “To see him standing tall for the first time was an incredible feeling — not only pride and love, but also gratitude for the excellent care Nicklas has received throughout his life.”
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