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13-year-old loses his legs to get a better life

Published: Sunday, Sept. 15 2013 6:05 p.m. MDT

Kaleo Niko gets support from his mother, Helen Niko, at Shriners Hospital for Children in Salt Lake City, Wednesday, Sept. 4, 2013. Kaleo had a bilateral amputation below the knee on Sept. 3, 2013.

Ravell Call, Deseret News

SALT LAKE CITY — For most 13-year old boys, having your legs amputated would be among the worst day's possible.

Kaleo Niko said he could hardly wait.

"I'm actually really happy because now I don't have to have any more feet pain,” said Kaleo, “I just have to go through a couple of more weeks of this and then I'm good."

Kaleo was born with clubfoot and arthrogryposis, a very rare congenital disorder where muscles and tendons do not develop normally.

To try and correct the problem, Kaleo had four surgeries on his feet, the first when he was just a few months old.

The surgeries were to get his feet into a functional walking position.

By the end of the surgeries, his feet were in a reasonable position, but were tremendously stiff, and constantly painful.

He enjoyed swimming, golfing, basketball, and bowling, but Kaleo said he couldn’t do any of them for more than a few minutes at a time.

"I couldn't keep up with my friends. Sometimes, I just had to sit out and watch them,” said Kaleo.

After his last surgery about 18 months ago, Kaleo decided enough was enough.

It was time to get rid of his legs.

"My doctors said this was the only option, because I've already had four other surgeries," Kaleo said.

Dr. Theresa Hennessey, with Shriner’s Childrens Hospital in Salt Lake City, said Kaleo’s decision to amputate his legs is from “a very unique set of circumstances that led to the decision to perform bilateral amputations.”

“Kids in his circumstance, tired of pain, tired of surgeries, and tired of not being able to do what they want to do, do make this very courageous decision,” Hennessey said, noting the rarity of the circumstances.

"It is radical, but in Kaleo’s case, he will be able to don prosthetic feet that do not hurt, and our hope is he will function better than he ever has,” Hennessey said.

Still, Kaleo’s mother was worried.

"I remember one night, he looked at me, crying, and he said ‘I’m done,’” Helen Niko, Kaleo’s mother, recalled as she became emotional. "They had reviewed his case, all of his past surgeries, and I think the general consensus was there is no other surgery they could do that would take the pain away and give him the quality of life that he was looking for.”

Last week the family travelled from their Colorado home to Salt Lake City, where doctors at the Shriner’s Hospital for Children amputated both of Kaleo’s legs below the knee.

Kaleo’s mother was worried about amputation, but she also knew, this sort of pain was something not even a mother's hug could fix.

"As a parent you want to be able to take that pain, but there are some that you can't," said Niko.

When she was pregnant with him, doctors told her something was wrong. They said abortion was an option.

She said no.

"I just can’t imagine not having him here,” said Niko. “There were a lot of tests thrown at us and whatnot. They wanted us to be fully aware of what we were getting into, in case we wanted to abort. We just refused.”

After the surgery, except for recovering from the surgery itself, Kaleo says the pain was gone.

"It feels really weird because I can wiggle my toes, but I don't have any toes,” said Kaleo.

He will get prosthetic legs next month.

Then, he will go on being a kid. For more than a few minutes at a time.

"Yeah, I can't wait for them. I just want to get them and go,” said Kaleo.

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