When 9-year-old Nick Nelson decided he was willing to give up his right leg to be able to run and play and jump off the monkey bars, it wasn’t just a figure of speech. That’s just what he did.
“Sometimes, you just have to make hard choices in your life,” he had told his hometown NBC affiliate in Minneapolis-St. Paul. “And that’s one of them.”
That was on the eve of the surgery on Oct. 10 during which his right leg was amputated at the knee. On Wednesday, Nick talked about his experience and his future with TODAY co-host Matt Lauer.
He’s getting a prosthetic leg in three weeks, and Nick was chafing over not being able to get around.
“I like baseball,” he told Lauer, adding, “I can’t really bat that well anymore, ‘cuz I can’t stand.”
His parents, Gary and Greta Nelson assured him that he will soon be able not just to stand but to do a lot of things that he’s been unable to do while growing up with a rare birth defect called Popliteal pterygium syndrome. Caused by one defective gene, the syndrome expressed itself as wing-like webs of tissue growing behind his knees that prevent him from being able to extend his legs.
He’s undergone numerous surgeries in his young life that have given him more mobility in his left leg, but his right leg was getting progressively worse. The web could not be entirely cut away because it is packed with nerves. Finally, doctors said that if Nick didn’t undergo the amputation, he would end up being confined to a wheelchair for life.
‘Mom, what are my challenges?’
His mother said Nick never looked at his condition as a handicap, even though it prevented him from doing a lot of things other kids do, like running freely and playing on the monkey bars. She talked about a discussion she once had with him in the car that left her deeply impressed with his toughness.
But, the Nelsons are a tough family. Nick’s sister, Naomi, 10, was diagnosed with leukemia seven years ago. After treatment, she remains symptom free.
“We were talking about challenges,” Greta Nelson said, “and we were having kind of a very deep discussion about all the challenges that people face in life, whether it’s physical challenges or emotional challenges. At the end of the conversation, from the back of the car, he says to me, ‘Mom, what are my challenges?’”
She said she was taken aback by that, and finally replied with a question of her own: “What do you think?”
“Well, I think just getting motivated to do my math homework,” he replied.
“We’re really, really proud of Nick for his maturity level,” his father said. “We’ve done a lot of surgeries in the past to try to correct his leg problems and it just didn’t work. It was a situation where had he kept his leg, it just would have kept causing more problems. Eventually, he would have been confined to a wheelchair.”
‘Any second thoughts?’
The decision to have the amputation was made by both Nick and his parents. It was only the night before the surgery that Nick had second thoughts, cradling in his mother’s arms and asking tearfully if he really had to go through with it.
Assured that it was the right decision, he woke up calm and determined to do what had to be done.
He had the surgery, underwent a brief stay in rehab, and two days after being sent home, went back to school.
He was welcomed back by his friends and classmates, who missed him. But when Lauer asked if they understood what he’s been through, he shrugged and said, “Not really.”
“Any second thoughts?” Lauer asked.
“I have a second thought about doing that,” rubbing his knee where his leg now ended, “’cuz I can’t walk right now. But in three weeks, I might get my prosthetic leg.”
Lauer asked his parents what Nick won’t be able to do once he gets fitted with his new leg.
“I think that’s pretty much up to his imagination,” Greta Nelson said. “Knowing Nicholas and the way he approaches life, there’s not a whole lot he won’t be able to do."