With every step 19-month-old Benajmin (Ben) Bronske takes, a legion of Stormtroopers lead his way.
Born into a family of avid Star Wars fans, Ben has become a fan as well. With an infectious smile, while wearing a shirt that says, “I’m a Trooper,” Ben proudly shows off his leg. It was uniquely made just for him – it’s covered in Stormtroopers.
“He’s got a really cool leg and a story to go with it,” said Sarah Bronske, Ben’s mother.
Bronske was blindsided the day her little boy was born. Every ultrasound had been normal, but when the doctors saw Ben’s foot for the first time, they immediately knew something wasn’t quite right. The sole of his foot was swollen and two of his toes were significantly larger than the others.
When Ben was 2 months old, the family met with Dr. Vincent Mosca, chief of foot and limb deformities at Seattle Children’s, to discuss their treatment options. Ben was diagnosed with macrodactyly, a rare disorder that causes abnormal over growth of bones and soft tissues of the foot and toes. Sarah was told that the already excessively large tissues in her son’s foot and toes would continue to grow at a faster rate than the rest of the foot.
“Typically, children with macrodactyly have enlargement of one toe and the bone and soft tissues leading to that toe,” said Mosca. “Ben’s case was extremely rare on the spectrum of macrodactyly, because it involved two toes and the bones leading to those toes and there was excessive enlargement of the soft tissues of the entire front half of the foot. Most physicians, even pediatric orthopedic surgeons, will never see a foot like Ben’s. I’ve seen five in 32 years of clinical practice.”
A decision to make
Sarah was given two treatment options: Mosca could salvage his foot by removing the two large toes and some of the excessive soft tissue on the sole of his foot, or he could amputate the entire enlarged front half of the foot.
“I immediately shut down the idea of amputation,” said Bronske. “I didn’t want part of my child taken off. It was extremely scary.”
But after discussing their options with Mosca, they decided amputation would be best for Ben.
“With limb salvage, Ben’s foot would not have looked normal,” said Mosca. “We would have needed to remove two of his toes and the bones leading to them as well as some of the extra fat under the front half of the foot. The result would have been a foot with three toes, large scars, and residual excessive fat around the front half of the foot. That would have made it difficult for him to wear a regular shoe. And he would have needed at least two more operations during childhood to remove some of the recurrent fat overgrowth. Each operation would have temporarily taken him out of his regular activities until he healed.”
Bronske wanted Ben to lead as normal of a life as possible.
“With an amputation, it’s one and done. Functions like walking and running develop as if a child never had the operation in the first place,” said Mosca. “The prosthesis needs to be replaced each year to accommodate for growth of the leg, but no more surgeries need to be performed.”
With a prosthesis, Ben can do anything.
“A friend of ours served in Afghanistan and lost his leg,” said Bronske. “Today, he’s climbing mountains. Ben will be able to do anything and everything anyone else can do.”
Walking, running and enjoying life
In August, Ben was fitted for his very first prosthesis. He didn’t have to go to a galaxy far, far away to have it made. The unique design was handcrafted at Seattle Children’s by Peter Yukawa, a member of the Orthotics and Prosthetics team at Seattle Children’s.
“Many families choose to personalize their prosthesis,” said Yukawa. “They bring in fabric and we customize the prosthesis for them. The whole process of making the prosthesis usually takes between seven to 10 days.”
Initially, Bronske had decided on a neutral fabric for Ben’s prosthesis. She went to the fabric store to pick out a plain hue of gray, something neutral that would match every outfit. Her plan went out the window when she spotted a fabric covered in Stormtroopers.
“That was it,” said Bronske. “It was too cool not to get.”
Testing out his new leg
Sarah was overwhelmed with lots of different emotions when Ben’s prosthesis was ready for him to try for the very first time.
“I was so nervous,” said Bronske. “He wasn’t very happy at first, and so I thought to myself, ‘What happens if this doesn’t work?’ Then he took his first step. I was beaming with pride! By the time we got home he was running around the yard.”
Today, you can find Ben running around the house, wielding his very own lightsaber. You would never know he has a prosthetic leg. It took him no time at all to get used to it.
Characters come to life
This weekend, Ben and his family got a special visit. A group of Stormtroopers surprised Ben and his family at their home. When Ben and his mother opened the door, they couldn’t believe their eyes.
“It was really fun and a great memory,” said Bronske.
It was also perfect timing. Next on the family’s agenda: they’re headed to the theater. They have tickets to see the next Star Wars movie: “Star Wars: The Last Jedi.”