Amit wearing an Ilizarov apparatus to lengthen his leg. (ZIMRA VIGODA)
(FoxNews) For months, 11-year-old Amit Vigoda has wanted just one thing: to have his right leg amputated.
And after a very long decision making process, Amit’s mother and father have agreed to make their son’s wish a reality.
“We hope it will give him great mobility and a life without limitation,” Amit’s mother, Zimra Vigoda, told FoxNews.com. “He’ll be able to do all the things he wants to do with maximum function and minimal pain.”
Amit was born with a very rare condition called congenital pseudarthrosis of the fibula and tibia, combined with osteofibrous dysplasia. According to the National Institutes of Health, congenital pseudarthrosis of the tibia alone affects between 1 out of every 140,000 to 250,000 births. The conditions cause some of the bones in the leg to be very weak, having a greater tendency to fracture.
“He’ll be able to do all the things he wants to do with maximum function and minimal pain.”
– Zimra Vigoda, Amit’s mother
And when the bones are broken, they do not heal properly.
Having lived with this condition his entire life, Amit has had very limited mobility, since he cannot place much – if any – weight on his right leg. To move around, he must use crutches or a wheelchair, and the pain from his fractures can be very intense at times.
So now, he is ready to move on without his leg.
“I’ve thought about it for a long time,” Amit told FoxNews.com. “Me and my parents and my family sat down and talked about it. I asked a lot of people questions, and I decided I want to amputate.”
A leg that won’t heal
Vigoda recently detailed her son’s struggles with his condition in a blog post on Kveller.com. She said she was first faced with the decision of amputation when Amit was a newborn, after her mother-in-law noticed something was odd about the shape of his leg.
To follow Amit on his road to surgery, visit http://www.tagamit.com.
“We met with the head of the orthopedic department, and he said we had three options,” Vigoda, who lives with her family in Berkeley, Calif., told FoxNews.com. “One, it’ll heal by itself; two, he’ll go through a series of operations, and in the end he’ll end up amputating; or three, we can amputate early at around age 2, and he’ll get used to a prosthetic. At that point, he was my third child, and he was a day-old baby, and I thought these people were nuts.”
Overwhelmed by the idea of removing her son’s leg at such a young age, Vigoda and her husband opted for a second opinion, seeking out a surgeon who could potentially fix the problem. For nearly a decade, Amit has had two significant factures and has undergone numerous surgeries to try to salvage his limb and get his bones to heal. These operations included the insertion of internal rods and a procedure called external fixation, in which a large metal device was screwed into the bones of his leg to realign a fracture.
While these techniques seemed promising for a time, Amit ultimately fractured his leg again last year, and the injury slowly expanded until he couldn’t place any weight on his bone whatsoever. During this time, the Vigoda family was living in the south of Israel, which proved to be a challenging place for someone with limited mobility.
“At one point, we had to get to a bomb shelter, and Amit was totally traumatized,” Vigoda said. “I had to get four kids, including Amit with his leg, down to a bomb shelter in 60 seconds. It was a very difficult time for us, and he wasn’t willing to go there again.”
Hope for the future
Now living in Berkeley, Amit is ready for a more active lifestyle. He is a dedicated member of his youth wheelchair basketball team with the Bay Area Outreach & Recreation Program (BORP), and he recently became the youngest member on their varsity team. Amit said getting involved with the sport has changed his life.
“I wanted to play soccer before, but I couldn’t because I was scared I’d break my leg,” Amit said. “My mom found a website about a wheelchair basketball, and they’re amazing people over there. I went there for the first time, and I really liked it, and now I love that sport.”
But now, Amit wants even more freedom, which is why he finally gathered up the courage to ask his parents for elective amputation. According to Dr. Joel Lerman, who will be performing Amit’s surgery, there are several situations in which elective amputation is an available, or even preferable, option – such as for the removal of certain tumors or fixing congenital conditions in which certain body parts do not form properly.
Lerman said Amit’s condition certainly qualifies for amputation, since treatment for congenital pseudarthrosis can be extremely difficult and last a lifetime.
“You can try to get it to heal, but the most reliable way is to take a section of the bone that doesn’t want to heal, remove that and try to connect good bone to good bone. But in some situations, that section is so big that it would shorten the leg too much,” Lerman, a pediatric orthopedic surgeon at Shriner’s Hospital of Northern California, told FoxNews.com. “…Or you can fix the bone, get it to heal and then do an elective lengthening procedure, but those are notoriously unreliable and don’t hold up.”
Amit is scheduled to undergo amputation surgery in early April at Shriner’s Hospital, and once his leg is removed, it will only be a few weeks before he is fitted with a prosthetic. After that, he will undergo months of physical therapy, through which he will learn how to walk and run as if his leg had never been removed.
“When all is said and done, the individual can be fit comfortably with a prosthetic,” Lerman said. “…With Oscar Pistorius, he had amputations bilaterally of his feet as a kid, uses prostheses on both sides and is an Olympic level sprinter. It’s kind of a case and point where function can really be fantastic.”
Vigoda said choosing to let her son undergo this operation was the most difficult decision she’s ever had to make, but she said she is hopeful for what Amit will be able to do in the future. As for Amit, he is looking forward to being able to run, climb, hike, and most of all, play soccer like he’s always wanted. He hopes that his story will inspire others who are struggling with similar medical issues – helping them to understand that options do exist.
“I made a blog to help people and give them hope and show them what [they’re] going to go through,” Amit said. “I wanted to help other people and show them that it’s not that bad.”
To follow Amit’s blog, visit http://www.tagamit.com.