Boy chooses to amputate legs for chance at pain-free life

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SALT LAKE CITY, Utah (KSL) – For most 13-year-old boys, having your legs amputated would be the worst. For Kaleo Niko, he couldn’t wait.

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

Kaleo was born with arthrogryposis, a rare disorder that includes joints problems, muscle weakness, and fibrosis.

His issues were with his feet.

Kaleo has had four surgeries on his feet, the first when he was just a few months old. However, none of them took away the pain for good.

Even though he enjoyed swimming, golfing, basketball, and bowling, Kaleo says 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,” Kaleo Niko said.

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,” he said.

“I remember one night, he looked at me, crying, and he said ‘I’m done,’ ” said Helen Niko, Kaleo’s mother. “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.”

This 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,” Helen Niko said.

In fact, when she was pregnant with him, doctors told her something was wrong. They gave her the opportunity to have an abortion and she said no way.

“I just can’t imagine not having him here,” she said. “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,” he said.

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,” Kaleo Niko said.

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