A leg down, but a leg up on life

Andrew Cudlipp, 14, had his right leg amputated at the age of 11. It hasn
Andrew Cudlipp, 14, had his right leg amputated at the age of 11. It hasn't slowed him down — Cudlipp swims, bikes, hikes and is enjoying life.
— image credit: Wesley Remmer/staff photo

Losing a leg may have helped Andrew Cudlipp establish his footing.

The Bremerton High School freshman was 11 years old when doctors amputated his right leg, which had stopped growing due to the rare bone disorder dysplasia epiphysealis hemimelica — “Trevor disease.”

The condition hindered Cudlipp’s mobility, making physical activities cumbersome, and it progressed over time.

There was little pain, but there also was little choice. Ten corrective surgeries had only prolonged the inevitable.

Cudlipp’s leg was surgically severed at the thigh in May 2006.

“My mom took it all pretty bad, but I didn’t cry at all because I kind of looked forward to it,” Cudlipp said. “My amputation wasn’t a bad thing. It was really a good thing for me.”

Cudlipp was diagnosed with HED at the age of 6 months, when a doctor discovered 12 lesions in the bone mass of his right leg.

The disorder, which is benign, affects the development of epiphyses in young children.

With a three-to-one ratio, it is more common in males than females.

The incidence rate of HED is about one-in-one-million, and Cudlipp called his “the worst case reported world wide.”

“It was a shock,” Cudlipp’s mother Lynn said of the diagnosis. “We didn’t really know what it meant.”

What it meant was surgery for Cudlipp when he was 14 months old — and nine more operations over the next decade — and a childhood that is best described as unorthodox. Bicycles and skateboards were replaced by body casts and bandages.

For a time, Cudlipp walked with a severe limp and the outside of his right foot faced the ground because his ankle was twisted at a 25 degree angle.

Doctors first suggested amputation when he was 5 — too young to choose for himself.

“I was an emotional wreck and I thought, ‘Oh, my god, I can’t make that decision for him. I don’t want him growing up hating us,’” Lynn said. “So we decided we would let him be a part of that decision if they time ever came.”

The time did come.

In January 2006, doctors told Andrew his knee and ankle were permanently fused and the growth plate on his right knee had closed, meaning the leg would no longer grow.

The best way to combat the problem area was to eliminate it.

“My doctor came in and was like, ‘Alright, basically Andrew, the way this is going you’re not really going to have as good a life as you could,’” Cudlipp said. “The only logical way was to get my leg amputated.”

The decision was made and a date set: May 16, 2006. That left the Cudlipp’s with about four months to plan, research and prepare for surgery.

“I couldn’t even talk about it without bawling,” Lynn said. “But after it was done, it was like, ‘OK, now we just move on.’ It was like a whole weight lifted off my shoulders and I didn’t really cry about it anymore. It was weird.”

Cudlipp, who at the time of surgery was in fifth grade, underwent surgery on a Tuesday and was out of the hospital by that weekend. It was a “pretty short” stay compared to some of his previous hospital visits.

He was confined to a wheelchair for the first two months post-surgery, returning to school in June toward the end of the academic year. Most of his classmates were receptive and supportive.

“I wanted to get back to school,” Cudlipp said.

Cudlipp received his first artificial leg that summer. It was comprised primarily of pulleys and cables, but it allowed him more mobility than he’d ever had.

“I recovered pretty fast. When I first got my leg about two months later, I started walking in like two minutes,” he said. “You’re supposed to use crutches at first, but I never used those.”

That leg was soon replaced with an advanced 8-pound version, featuring a hydraulic knee and a two-step foot. It is built of titanium, carbon fiber, aluminum and rubber.

The detachable device gives Cudlipp enough mobility to participate in most activities, including his favorite: bike riding.

Not only is Cudlipp riding, but he is doing so at a swift clip. He rode between 700 and 1,000 miles last year, he and Lynn estimated, and he participated in a six-day ride from North Bend to Potholes State Park in Moses Lake last summer.

As he continues to build endurance and strengthen his left leg, Cudlipp hopes to join a cycling club.

“That was one of the main reasons (he chose amputation). He always wanted to ride a bike,” Lynn said.

When he isn’t on a bike, Cudlipp, 14, is in the classroom or a pool.

Earning Honor Roll status at Mountain View Middle School, where he was a member of the wrestling team, Cudlipp developed a passion for mathematics. He hopes to become an engineer and also enjoys writing.

Away from the books, he is a member of the BHS swim team. Swimming is an alternative to wrestling, a sport Cudlipp decided not to pursue in high school.

“I probably wasn’t going to be able to do a lot of the workouts, and I always kind of feel bad about that,” he said. “I figured swimming is another alternative, and I have a lot of upper-body strength.”

That strength is evident in the water. Cudlipp, who took swimming lessons as a child and has “always been pretty good” in the water, was clocked at 37 seconds in the 50-meter freestyle. His goal is to shave that down to 35 seconds or faster by the end of the season.

Swimming gives Cudlipp a sense of normalcy in a life that few would classify as routine.

“We’ve never held him back or said, ‘No, you can’t try that, you can’t do that.’ We figure he’ll figure it out on his own, if he can do it or can’t do it.” Lynn said. “He’s always been so positive. We’re proud of the way he’s handled it.”

Andrew, who in the future hopes to participate in a triathlon, views his amputation as an event that created opportunities rather than hindrances.

The word “handicapped” is seldom used in the Cudlipp household. That term was left somewhere in the wake of Andrew’s cycles, strides and strokes.

“People will think ‘handicapped’ people can’t do much, but I always show them up,” he said. “People ask me about swimming. They’re like, ‘How do you swim?’” And I’m like, ‘Faster than you.’ That’s my answer.”

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