From a distance, Max Lien looks like any other young boy in the neighborhood playing basketball in his driveway. But for this tall 12-year-old from Hawley, Minnesota, shooting hoops is something very new.
A rare condition
“When Max was one, he did not want to walk and right there, something just kind of clued us in as something wasn’t quite right,” said Christina Lien, Max’s mother. “So after seeing several specialists, Max was diagnosed with neurofibromatosis type one.”
Max had a rare condition in which a tumor ran down the nerve endings in his leg, kind of like a spider web. With no way to remove the tumor, he was often in pain and in danger of injuring his leg at all times. He essentially walked on the side of his ankle, and like most people who have neurofibromatosis, it was only a matter of time before complications arose.
“When Max was in fourth grade, everything kind of really started boiling up. He’d broken his leg twice that year just from walking and that right there was kind of a clue as to some of the bone issues that he was going to be facing. Those two breaks did heal, but in the meantime he also developed some bleeding within the tumor which caused additional pain,” said Christina. “The downside is there’s really nothing that they could do for him. There is no cure. Not really even a treatment. It’s just kind of trying to do what we could at the time.”
So Max and his family chose to amputate his leg.
“It was really an easy to make the decision,” said Max. “We had tried everything and nothing really worked.”
Moving forward with a new leg
The operation went well, and about two months later he was fitted with his first prosthetic. Certified prosthetist Amy Bauman of Sanford Health Equip in Fargo fit Max with his new limb, and will be working with him throughout the rest of his life. Whenever he has a growth spurt, or needs an adjustment to his prosthetic, Max will see Bauman and Sanford Health Equip. Plus, Bauman has another connection to Max as well.
“Max is actually a unique situation because I grew up with his mom. We graduated together,” said Bauman. “He’s also in the same grade as my son in the same town. So I knew of Max before his amputation.”
Bauman says her work often goes far beyond simply finding the right equipment for patients though.
“It’s not just fitting a prosthetic,” said Bauman. “There’s a lot of emotional support that happens there, a lot of guidance. So we become very close.”
“Amy has been there for every little piece that we could have needed,” said Christina Lien. “Your prosthetist is with you for the rest of your life. I couldn’t be happier about that because I feel like we’re in such good hands and I feel a great relief that this is available to us in our region, and we are not having to drive all over the country to get the kind of care that he needs to have that prosthetic in the best working shape.”
Freedom of movement
So far, Max is making the most of his newfound mobility.
“Walking now is ten times more comfortable than before amputation,” said Max. “Now I’m actually able to run comfortably, rather than having to kind of limp while I run. Before I had to kind of walk a weird way where my hips weren’t even, but now my hips are like at the exact same level. Now I don’t really feel anything except for, like, phantom pain. But other than that, there’s not really any more pain.”
“Max didn’t lose a good limb. He lost a very poor limb that was just not able to be used,” said Christina Lien. “So even walking now, I can’t keep up with him anymore, which we love. He’s quite tall for his age and has very long legs. And I just see all these things that before would have been a struggle or that he couldn’t have necessarily enjoyed doing where it doesn’t feel like a hassle anymore. It feels like you can really enjoy those activities.”
Which brings us back to that driveway. Where now, the kid who couldn’t always wear shoes because of the swelling around his foot is lacing up his sneakers. And where he can meet all of the challenges coming his way, including beating his dad in a game of HORSE.
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Posted In Children's, Fargo, Specialty Care