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Saturday, Mar 16 2013 03:00 PM

Inspiring young amputee adjusts to life with a new limb

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    By Henry A. Barrios / The Californian

    After having his leg amputated in late 2012, Ethan Perez shows his new leg, which he is learning how to use. At left is his cousin Diego Armendariz.

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    By Henry A. Barrios / The Californian

    Ethan Perez's parents, Debbie Landry, right, and Tony Perez are delighted with the progress Ethan is making with his new leg.

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    By Henry A. Barrios / The Californian

    Ethan Perez uses a walker to maneuver around some obstacles and to steady himself as he becomes more comfortable using his new leg.

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    By Henry A. Barrios / The Californian

    Ethan Perez abandons his walker as he pitches a few balls to his cousin Diego Armendariz.

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BY RACHEL COOK Californian staff writer rcook@bakersfield.com

The last time 9-year-old Ethan Perez walked before this year was in second grade.

"He had a severe limp then. And I mean, people were clapping and cheering for him every time he'd run down the (basketball) court," Ethan's mother, Debbie Landry, said.

After the basketball season ended, so did Ethan's walking. A rare and painful condition kept him from using his left leg.

"He just never would say, 'Painful,' but we'd go to the doctor and they were like, 'Obviously it's painful.' If it wasn't, you'd put your pressure on it. (Ethan) just never complains," Landry said.

In January, Ethan took his first steps on two legs again. This time, one of the limbs was crafted out of colorful materials instead of flesh and bone.

The fourth-grader, who had an above-the-knee amputation of his leg in October, recalled being impatient to try out his new prosthesis.

"I was like, 'Could I just walk?' Who wants to hear talking when you haven't walked in two years? No one," he said.

A condition called arteriovenous malformation in Ethan's left leg and foot prevented him from running, walking and playing sports. One of Ethan's physicians at UCLA said the condition is "disordered development of arteries and veins" that prevents blood flow to tissue.

Ethan's leg became the source of intense pain that made it hard for him to sleep and the limb became permanently bent. He hopped and rode a tricycle to move around at school. He couldn't join in sports and play with his peers and older brother, Cole Perez.

So last fall, Ethan underwent surgery at Mattel Children's Hospital UCLA to have his leg amputated. In the weeks leading up to his surgery, Ethan smiled and shared his story in front television and newspaper cameras. His father, Tony Perez, hoped his son's buoyant spirit would encourage others.

Ethan's family also strove to stay positive and focused in the face of the impending surgery. Ethan and Cole maintained straight-As in school during the period when Ethan had his amputation.

"To me, that was probably one of the most amazing things," Tony said.

After the family's home was burglarized, it received a flood of support from both locals and outsiders. A special scooter that the family had bought Ethan as his surgery present was stolen but quickly replaced. One person sent the family to Disneyland in January.

Tony and Debbie remain grateful and astonished by the outpour. They said they keep in contact with the people who reached out to support their family and became friends in the process.

"For a situation that seemed so yucky, it's been a blessing. It's weird to say that," Debbie said.

Valley Institute of Prosthetics and Orthotics was inspired by Ethan's story in the newspaper and offered to give the boy his first prosthesis for free. Trevor Townsend, a certified prosthetist and orthotist and partner at the business, said they donated Ethan's prosthesis and Össur, a company they work with, donated components as well.

Ethan remains a spitfire but mastering a prosthetic limb is a big learning curve. He attends physical therapy frequently and is learning how to navigate the world on his new limb. Sometimes he uses a walker to steady himself when he is stepping out with the artifical limb.

"There's so much to learn about having a prosthetic leg. If you don't have enough socks on, you'll bruise the bone. If you don't have the liner on, you can't get the leg on," Debbie said.

Townsend said it takes about 70 percent more energy for an above-the-knee amputee to walk with a prosthesis and Ethan was pretty fatigued and lacked stamina after spending so much time using only one leg.

Ethan uses his prosthesis four or five hours a day -- in the morning at school and in the afternoon when he gets home. Getting around is easier on crutches, but Ethan said he knows he has to learn to use his newest tool.

"I thought it was going to be hard but I didn't know it was going to be this hard," he said.

Townsend encourages Ethan to put some scratches in his prosthesis and not to worry about roughing it up while he's tackling all the new things he can do. He told him to think of the nicks as "battle wounds."

"It's gonna be a lot of hard work for him. He's got good family support and he's got good support from us and his therapist," Townsend said.

So far, Ethan has achieved all the goals he sets as he adjusts to life as an amputee. He aimed to be back to school after winter break and he returned along with his classmates at Endeavour Elementary School on Jan. 7.

His next ambition is to participate in his school's April track meet. Ethan is also brushing up on baseball in preparation for a summer softball program for amputee children coached by wounded service members that he was chosen for.

The whole family will accompany Ethan on his trip to Orlando.

"I'm just so happy he gets to see other kids like him 'cause that's the hardest part," Debbie said.

At the Perez home, the family's relief at having the surgery out of the way and Ethan feeling better is evident. The Perez clan has always been upbeat and jovial, but they laughed a little easier on Tuesday as they talked about life with the prosthesis.

Life is "better than normal" now, Ethan said. He can play soccer with his crutches and basketball wearing his prosthetic leg. Now he sleeps so soundly that he even snores, Tony joked.

"For him, it's a huge gain from where he was," Tony said.

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