Nicklas' Story

In many ways, 10-year-old Nick Nelson is like any other little boy.  He loves playing video games, joking and causing mischief with his friends. But Nick is also wise beyond his years, say his parents, Gary and Greta. That’s because he’s had to make a very tough decision—not once, but twice.

Nick 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.  For Nick, the condition also caused craniofacial anomalies (including a cleft lip and palate), orthopaedic problems and urologic issues.

Shortly after his birth, Nick and his parents came to Gillette Children’s Specialty Healthcare.  Nick had 11 surgeries before his first birthday, including one to disconnect the cord inside his legs that caused the webbing. 

Although the surgeries helped, Nick could never straighten his legs. Both legs, especially the right one, caused him pain. He typically used a wheelchair, but dreamt of running and jumping off monkey bars with his classmates. Nick’s physicians recommended that his right leg be replaced with a prosthesis to improve his mobility and eliminate his discomfort. But the final decision was up to Nick.

That’s why Nick made a difficult decision last year. He asked doctors to amputate his deformed right leg. "I want to run like my friends," Nick said. "I want to be as tall as my friends."

Nick, his parents and his doctors felt confident amputation was the best option. Without the surgery, he'd remain in a wheelchair and continue to experience pain. He also could develop scoliosis. The surgery was successful, and Nick was fitted with a prosthetic leg in December 2007. “It was a hard decision, but the right one," says Gary.

Although the amputation helped improve Nick’s mobility, his remaining leg worsened, causing him significant pain. On his physician’s recommendation, Nick decided to have his left leg, too, replaced with a prosthesis. (Most people with popliteal pterygium syndrome ultimately need to have both legs amputated.)  The surgery occurred in September 2008. Nick is undergoing physical therapy and learning to walk with two prosthetic legs.

Though losing his second leg was difficult for Nick, he knew the surgery would give him newfound freedom. “For Nick, surgery meant the end of something painful. It meant doing things he’s never done before,” says Greta.

Despite his challenges, Nick maintains a positive outlook—and a contagious sense of humor. During his September 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.”

Greta says the family is fortunate that Gillette offers a broad span of services to meet Nick’s needs throughout his life.  “We’re grateful to the entire team at Gillette, which has been with us along the way,” she says.

Comments

[Ciaran & Catherine Mac Murchaidh]

Good to hear that Nick is making good progress. He appears to be a happy fun loving young man.
Our two year old son has PPS and we are currently in the process of deciding between ilizorov frame treatment and amputation.
We would appreciate it if Nick and/or his parent would be happy to answer some of our questions on how to proceed and to find out more about how our son's life will be.

[Pediatric Physical Therapy]

So sweet story, and the most important is that he maintains a positive outlook and a contagious sense of humor, he is an example.
Thank you!!

[Costumes]

What a brave boy, and his family too,good to see he is keeping a positive outlook on life and making a better furture for himself

[Dress Shoes]

and the most important is that he maintains a positive outlook and a contagious sense of humor, he is an example.
Thank you!!

[lacoste observe]

What a brave boy, and his family too,good to see he is keeping a positive outlook on life and making a better furture for himself

[בוטוקס]

I generally used a motorized wheel chair, but imagined of activities off horse cafes with my friends. My doctors suggested that my right leg be changed with a prosthesis to increase my flexibility.

[upcoming pc games]

Good to know that the boy is normal but it felt bad to hear that the syndrome’s hallmark is webbing on the back of the legs.The child is very young and is affected by disease..