On his blog earlier this year, Amit shared his enthusiasm about upcoming surgery with his followers on a video: “I want to wear shorts to school because I want to get the kids ready, because in a couple of weeks I am going to come to school with a case without a leg. I can’t wait.”
Amit’s condition was discovered when he was born with a broken leg. Most children with the condition don’t have fractures until “a year or two later,” said his mother.
Doctors presented three options: let the leg heal by itself; initiate surgeries that would likely end in amputation; or amputate at the age of 1 or 2, so he could “lead a regular life,” said Vigoda.
“I almost fainted as I was holding this baby that had just been born and someone says, 'Take his leg,'” she said.
In the end, they opted for multiple surgeries. In one procedure at age 9 or 10, he was in contracture for seven months, in a wheelchair, and then had to learn to walk again with a brace.
Other parents have chosen to amputate earlier.
Andy Hovis Wagler, moderator for the Congenital Pseudoarthrosis Support Group on Facebook, said her family chose to amputate their daughter Ayden's leg at age 3.
“She is doing fantastic," Wagler told ABCNews.com. "She was diagnosed when she was 8 months old. Her leg broke while in a brace by 10 months. We braced her until she was 3 and it showed no signs of healing. So we made the decision to amputate at that time to give her a better quality of life.”
Ayden now has a prosthetic and has started t-ball.
“She can do everything now ... dance, cheer clinics,” said Wagler, 38, who lives in Odon, Ind. “You name it, she will try it.”
As for Amit, he has watched his two older brothers play competitive soccer and longed to join them. For the time being, he has discovered wheelchair basketball and has excelled in the sport.
“His coach is a four-time Olympic player and an inspiration to him,” said Vigoda. “He doesn’t let too much self-pity go on.”
In elementary school, Amit was teased for his disability.
“A bunch of boys would yell, ‘Catch me if you can,’” said Vigoda. “They would limp like he did. Kids can be cruel.”
But now, in the sixth grade at a Realm Charter School in Berkeley, Calif., “He makes friends everywhere,” she said. “He’s a leader and the kids respect him.”
Just last week, she said, Amit’s school awarded him with a surprise award for “grit -- showing perseverance and hard work despite constant pain."
Vigoda, who works for the Israel-based Arab-Jewish Center for Equality, Empowerment and Cooperation, said she has “internalized” the idea of empowerment in her own life.
“I hope that it has affected my son, as well,” she said.
“Achieving healing is less important than to be able to get an active life,” said Vigoda of Amit. “My kid has only one childhood.”