Benjamin (Ben) Bronske recently said goodbye to the legion of Stormtroopers who have been with him since his first small steps. For many parents, a child’s growth is charted by a simple mark etched on a door frame. For Ben, his growth will be commemorated by a different kind of memento, one of resin and carbon fiber.
Ben recently outgrew his first prosthesis and welcomed a new gaggle of fictional Star Wars characters to walk by his side – porgs. Saying farewell to Ben’s first prosthesis wasn’t easy for Sarah Bronske, Ben’s mother. It signified a major milestone.
“It means my baby isn’t a baby anymore,” said Bronske. “Sounds silly, but I got really attached to his trooper leg. It was the first and it was such a big deal to get a foot for him.”
An unexpected diagnosis
Ben was born with macrodactyly, a rare condition that caused the sole of his foot to swell and two of his toes to grow larger than the others. Every ultrasound leading up to Ben’s birth had been normal, and so when doctors first saw his foot, they were surprised.
Dr. Vincent Mosca, chief of foot and limb deformities at Seattle Children’s, met the Bronske family when Ben was only 2 months old. They were told the excessively large tissue in Ben’s foot would continue to grow at a faster rate than the rest of his foot. According to Mosca, Ben’s case was unusual, even for macrodactyly, due to the extensive involvement of the entire middle and end of the foot and toes. Mosca gave the family two treatment options: they could either salvage the foot by removing the two large toes and some of the excessive soft tissue, or Mosca could amputate.
In the end, both Mosca and the family agreed the best treatment option for Ben was amputation. Ben could live a completely normal life with a prosthesis.
Today, Ben is doing just that. He runs, jumps, and climbs just like any other precocious 2-year-old boy.
Customizing Ben’s prosthesis
When Bronske had to choose how to adorn her son’s first prosthesis, it was an easy decision. She went to the fabric store to find a neutral gray color, something that would match any outfit, but fell in love with a black and white Stormtrooper pattern instead. One could say she was drawn to it by the Force. Their family is avid Star Wars fans.
This December, just before Christmas, Ben was fit for a new prosthesis. His beloved Stormtrooper prosthesis was getting too snug and it was affecting his gait. A new prosthesis meant a new design, and Ben was old enough to choose a pattern for himself.
Together, Ben and his family went to the fabric store where he was given a myriad of options. When Ben laid his eyes on a porg covered cloth, it was love at first sight. Bronske wasn’t as enamored, but was won over at the sight of Ben’s big smile. Ben couldn’t be persuaded away from the fictional fuzzy birds from the latest Star Wars movie, “The Last Jedi.”
“He loves his new leg and owns it,” said Bronske laughing.
For Christmas, he was given a big porg stuffed animal to match his new leg.
New leg, new year
Peter Yukawa, who created Ben’s first prosthesis, has made hundreds of custom prosthetics and orthotics for children at Seattle Children’s. When he was given the fabric Ben chose for his new prosthesis, he was excited. The Star Wars patterns are his favorite. He, like the Bronske family, is a big Star Wars fan.
“It is bitter sweet to see his old leg go away,” said Yukawa. “But watching patients like Ben grow up and grow out of their old prosthesis is exciting. We give them a tool to use so they can go about living their lives. He’s just like any other kid. That’s what’s cool about my job, watching these kids succeed in life.”
On average, Ben will need a new prosthesis about every year. Both Bronske and Yukawa are excited to see what theme he chooses next, and they secretly hope he continues the Star Wars theme.
“I can’t wait to see what he chooses next and how they evolve over time,” said Bronske.
Bronske hopes their story can inspire other people. When Ben was first diagnosed they felt overwhelmed.
“It was scary at first, but now seeing Ben run around and do anything any other kid can do, has wiped away all the doubts we had at first,” said Bronske.
To other families with children with macrodactyly, Bronske says, “It’s going to be okay. Your child is going to thrive.”
Last year, Ben and his family got a surprise visit from Stormtroopers from the 501st Legion to celebrate his first leg and to help show him he’s special. This year, who knows who, or what, may come knocking at their door from a galaxy far, far away.