Sandspur photos by Andrew Craft

Ty Williams, 13, straps on his prosthetic leg with his new prosthetic foot at AOP Orthotics and Prosthetics. Williams, 13, had to have part of his leg amputated because of cancer.

 

 

Teen amputee hopes to play sports, skateboard in the future

 

By Gregory Phillips
Staff Writer

The Sandspur

When Ty Williams occasionally complained of pain above his right knee, his parents assumed it was an old recreation football injury flaring up again.

“It was one of those things that kept going back and forth,” his mother, Carmen, said.

 

But by the end of the 2006 summer baseball season, he could hardly walk.

 

An MRI scan in July showed a mass above his right knee. The mass was removed, but local doctors couldn’t identify it.

It took specialists in Washington to determine the mass was a malignant tumor

Cancer. More specifically, synovial sarcoma, a rare soft-tissue cancer that usually shows up near joints in the limbs.

Ty, still just 12 years old, was already in physical therapy to get his leg working again after the first surgery, but worse news was to come.

Ty would have to lose his right leg because the cancer had contaminated the knee.

For a kid who loved football, baseball and skateboarding, that hit hardest.

“The only thing that bothered me was when I found out I was going to be losing my leg,” he said.

“That really took us back,” his mother added.

Ty was given three options: Amputation above the knee; leg fusion, in which the lower leg would be reattached above the knee, leaving him stiff-legged; or rotationplasty, a rare and novel surgery.

The leg would be amputated above the knee. The lower leg, minus the knee, would then be reattached  —  facing backward. The ankle and heel would act as a knee joint. The sole fo the foot is where the shin used to be, the foot pointing downwards like a ballerina's.

Ty picked rotationplasty, because doctors said it would give him the widest range of movement. The surgery was performed in November, just before Ty turned 13.

“I figured it’d be easier to play sports and stuff,” he said.

His parents let him make the choice.
 “I felt it was important for him to be able to make the decision,” his mother said. “ Whatever he thinks will make him be able to do things.”

It’s an unusual sight, a foot facing backwards at knee level, but Ty is unfazed. His mother said he’ll show it to anybody.

“Actually it’s kind of cool looking,” he said.

Ty was offered a cover for his metal leg post, but turned it down. He said he wanted his hardware showing.

His classmates at Gray’s Creek Middle School are fascinated and ask plenty of questions, such as whether he can wiggle his toes. He can. In fact his foot is still ticklish.

It took some time for the feeling to come back though, and for his brain to catch up. At first, his toes would feel like they were at the end of the bed, even though they weren’t. And when he scratched his instep, it still felt as if it was facing inwards, except it was now on the outside of his foot.

Those sensations have since corrected themselves as Ty’s brain has rewired itself to adapt.

But Ty is still on his first steps along a lengthy path of physical therapy. He has weights to stretch his foot to a wider angle.

“We have to really watch out for his toes,” his mother said

But his hardware got a boost last week. Prosthetics dealer Ossur gave Ty a VariFlex prosthetic foot, worth about $3,000, to replace the more basic model his insurance paid for.

Rich Davis, who works at AOP Orthotics and prosthetics on Raeford Road, arranged the donation. He used to coach girls softball with Ty’s dad.

“I told them whatever they needed I’d help them out,” he said.

The VariFlex is made up of two parallel carbon strips in a J-shape that resembles, of all things, a shoehorn. Having two strips makes the foot more responsive to uneven ground and the curve of the shape helps return more of the energy in each step.

“How does that feel?” orthotist Mark Fordham asked Ty as he took his first steps on the foot at the cluttered AOP workshop.

“Feels good,” Ty replied with a grin.

“Let’s keep it like this and keep an eye on it,” Fordham said.

As Ty walked up and down, his even strides contrasted sharply with the pronounced limp that showed when he arrived.

“It’s pushing me forward more,” he said.

Ty swung his hips a few times as if holding a baseball bat. He said he could feel the foot rotating more.

                                                                                                                     Ty Williams, left, tries out his new prosthetic foot as his mother, Carmen Williams, Rich Davis

and Mark Fordham look on at AOP Orthotics and

Prosthetics

Adapting interests
 

It’s been a tough year for Ty.
 

“He can’t get up and do the things he’s always been able to,” his mom said.
 

That was brought home more by a visit to the new Mega Skate Plaza on Blount Street with his friends than it was by his surgery.
 

“I don’t think it hit him then as much as it’s hitting him now,” his mom said. “He’s wanting to get back on a skateboard really bad.”
 

Instead, Ty has spent time designing skate parks. He wants to be an engineer one day. He’s also learning to play the guitar and spending lots of time on the computer.
 

But he’s active too. Swimming is part of his therapy, and he’s also taken to grass boarding — being pulled behind a four-wheeler on a board. 
 

His therapists were a little shocked, his mother said, but she said she’s taught him never to say “I can’t,” a lesson that losing his leg hasn’t changed.
 

I want him to to be able to try whatever he wants to try,” she said. “I don’t want anything holding him back.”
 

He’s even thinking about trying wrestling next school year.
 

“Mama’s going to have to think about that though,” she said.
 

Ty’s family has documented his journey online — at www.tysjourney.org — to help family and friends keep up with developments and to spread awareness of synovial  sarcoma and rotationplasty.
Ty also wrote a book called “Ty’s Journey” about his experiences for a seventh grade project.
 

Like any mother, Carmen Williams worries about where that journey will lead. Ty also needs regular checkups to make sure his cancer hasn't returned.
 

But in the meantime, her son is taking the “never say can’t” attitude into a goal one of his therapists has set for him before she leaves next month.
 

“She wants him kind of jogging or at a run by August third,” Williams said. “I think this foot’s going to get him there.”
 

Staff writer Gregory Phillips can be reached at phillipsg@fayobserver.com or 486-3596.