Today, Amit Vigoda will be undergoing the operation he has begged for so that he can, for the first time, be a normal kid. He will have his right leg amputated and fit with a prosthetic.
Amit, 11, was born with a rare orthopedic condition, congenital pseudoarthrosis of tibia and fibula with osteofibrous dysplasia, which causes his leg to continually fracture. At one point about 18 months ago, he would wake up twice weekly in excruciating pain with night terrors.
“Hi guys, it’s the day,” he said on his own Tumbler blog, where he has posted videos regularly in the months leading up to this moment. “I have to be there in 25 minutes and I am really, really nervous. The only problem is I am super tired ... and I really, really want to get this over with and finish it. I am ready.”
Vigoda is receiving surgery below the knee at Shriner’s Hospital for Children in Sacramento, Calif. Six weeks later, doctors will fit him with a prosthetic and three months after that, he will be “up and running ... well, walking,” his mother, Zimra Vigoda, told ABCNews.com. “He’s going to have a life with no limits.”
This morning, his mother wrote ABCNews.com an email just as she was ready to wake her son for the big day.
“I am crazy nervous but since I am the supposed adult,” said Vigoda, 45, “I am trying to act normal. I even sent out a few work emails this morning.”
The night before surgery, Amit posted an extensive thank you on his video blog to “all the people who have helped me with the time I waited for amputation,” including his two brothers, friends at school and coaches of his wheelchair basketball team.
Vigoda, a mother of four, said the hardest decision she ever made was to agree to have Amit’s leg amputated. For years, she held off on inevitable surgery, hoping his condition would stabilize or resolve. But his cries of pain were too much.
“I awake to a familiar screech. ‘Mommmmmyyyy ... HELP!’” Vigoda wrote on the blog Kveller.com in March. “’Mommmmmyyyy ... I want to cut it off, I can’t stand it anymore. ... I hate my leg. ... Make it stop,’ he hollers, eyes wide open yet not quite awake.”
Amit has been in constant pain with a rod in his leg, and he can only walk with crutches, hop on one foot or crawl. He’s had multiple surgeries as doctors have tried, among other things, “an inquisition-like procedure called external fixation -- or in plain language, rods, nuts and bolts through the bone, muscle and skin," wrote his mother.
These treatments last about a year, but then Amit gets another fracture. Growing up, he was never allowed to jump or play any contact sports for fear his fragile leg would break.
Amit told ABCNews.com last month that he was “a little bit afraid, but I have been through so much, it’s just like another surgery -- except it will change my life. I won’t have any pain anymore and I can run and jump and play soccer.”
“He is still ready before I am, but his father and I are supporting him,” said Vigoda, who lives with her children, aged 6 to 15, in San Francisco’s Bay Area. “We’ll never know if this is the right thing."
When Amit was 7, his doctors recommended he have his leg amputated. But, Vigoda confessed, she wasn’t ready.
Doctors told the family, “It’s not your decision anymore," she said. "When he was 2, it was your decision and now it’s not.”