From First Steps to Endless Possibilities
Arlo, a Shriners Children's Lexington Patient Ambassador, has had six prosthetic legs (or “leggys” as Arlo calls them) so far, each one a little different from the last.
Arlo has a lot of “leggys.”
At 7 years old, the soon-to-be second grader can tell you all about them. There have been six prosthetic legs (or “leggys” as Arlo calls them) so far, each one a little different from the last. Some have cooler designs. Some have more advanced technology. All of them have helped him do what he loves most: just be a kid.
Whether he's rock climbing, playing golf, creating arts and crafts projects, or spending time with his friends and older brother, Arlo rarely slows down.
But when Arlo was born, his future felt much less certain.
Baby Arlo takes a nap.
A Surprising Diagnosis
Arlo was born with fibular hemimelia, a condition in which the fibula – the smaller of the two bones in the lower leg – does not fully develop. His parents, Emily and her husband, Tyler, had no idea anything was wrong until he was born. "We didn't know he had any issues until I gave birth," Emily said.
Living in a small town in Indiana, the family suddenly found themselves searching for answers. They connected with other families, researched treatment options and traveled to hospitals across the country seeking opinions about what path would be best for their son. "We went all over the country," Emily said. "We wanted to make sure we understood every option."
Eventually, the family narrowed their choices and even scheduled surgery elsewhere. Then someone suggested they visit Shriners Children's Lexington.
And that changed everything.
What we found here was so much more than exceptional medical care. We found people who have become part of our family’s story.
Arlo stands and plays before his amputation surgery.
Finding the Right Team
Arlo was about 7 months old when his family first walked through the doors of Shriners Children's Lexington. "I would say within minutes we knew this was where we wanted to be," Emily said.
The family met Vishwas Talwalkar, M.D., who took the time to explain Arlo's condition and discuss treatment options in a way they had not experienced before.
Most importantly, Emily said Dr. Talwalkar helped them look beyond the immediate challenges and focus on Arlo's future. "He told us to picture him as an adult," Emily said. "That really stuck with us."
After that visit, the family canceled the surgery they had scheduled elsewhere and chose Shriners Children's Lexington. “What we found here was so much more than exceptional medical care,” Emily said. “We found people who have become part of our family’s story. We found doctors who helped us make difficult decisions with confidence. We found nurses, therapists, prosthetists and care coordinators who treated Arlo like one of their own.”
When Arlo was 9 months old, Dr. Talwalkar performed a Boyd amputation, a procedure that preserved his heel and created a strong foundation for future prosthetic use. Three months later, Arlo received his first prosthetic leg through Shriners Children's Lexington Pediatric Orthotic and Prosthetic Services (POPS) department.
Then he took off.
Arlo sits with his first prosthetic leg.
Taking His First Steps
Like many toddlers, Arlo began walking around his first birthday. Soon after, he was running.
Since then, he has continued to receive prosthetic care through POPS while working closely with his care team, including prosthetist Robert Weber and orthopedic surgeon Janet Walker, M.D.
“We’ve watched him grow up from his amputation to walking his first steps,” said Beth English, a Shriners Children’s Lexington recreational therapist who has worked with Arlo’s family over the years. “He’s not walking in the door. He’s running in the door.”
As Arlo has grown, so have his prosthetic needs. Dr. Walker later performed a tibial osteotomy and knee revision to help straighten his leg and support healthy growth.
As of this year, Arlo is on his sixth prosthetic leg. "Each design gets cooler and cooler," Emily said.
His latest prosthetic leg design? Ducks. "I'm super proud of my legs," Arlo said.
Arlo sits with his latest duck-themed prosthetic leg design.
The prosthetic legs are so much more than technology, though. "The leggys, I would say, represent hope," Emily said.
Tyler agreed, adding that the impact of Arlo's care goes far beyond prosthetic legs and surgeries. “What [Shriners Children’s has] done for Arlo is ... it's a debt I can't repay,” Tyler said. “It's something that I couldn't give my son.”
A Special Place
Arlo loves coming to Shriners Children’s Lexington for his appointments. "It's probably my favorite place to go," he said. In Arlo’s words: Shriners Children’s Lexington is a special place. “Everyone makes me feel cared for and supported,” Arlo said. And if you ask Arlo what the best part of coming to Shriners Children’s Lexington is? He’ll say that it’s seeing Robert. "Robert is nice," Arlo said. "He's really fun."
Robert, Arlo's prosthetist, makes adjustments to Arlo's new prosthesis.
Robert’s also the person who helps create the prosthetic legs that allow Arlo to keep exploring new adventures. “It’s my job to make him prosthetic legs so that he can walk and run,” Robert said. “I’m very proud to say that I work at Shriners Children’s.”
Without Shriners Children’s Lexington, Emily said, their journey would have looked very different. "Without that support, I can't imagine where we would be," she said.
And when Emily thinks about Shriners Children’s Lexington, she doesn’t just think about the care Arlo received. “We think about the relationships we have built,” she said. “We think about the families we have met along the way. We think about the moments of laughter, encouragement, and support that carried us through difficult days.”
Arlo holds a Love to the Rescue blanket during a recent Direct Response Television video shoot for Shriners Children's.
From Patient to Patient Ambassador
Over the years, Arlo has grown into an energetic and determined young boy who enjoys rock climbing, painting, arts and crafts, and mini golf. “The doctors, nurses and staff have helped me learn to walk, run, climb and do the things I love,” Arlo said.
He has participated in a Shriners Children’s Lexington fundraiser, Art with Heart, for four years and loves expressing his creativity through art. He makes friends everywhere he goes and dreams big.
As a Patient Ambassador for Shriners Children's Lexington, Arlo has embraced opportunities to share his story with others. “Over the years, our relationship with Shriners has grown far beyond appointments and procedures,” Emily said. “Arlo has had opportunities we never imagined possible.”
He appeared on an episode of Wizard of Paws, attended community events and was recently featured in a Shriners Children’s philanthropy commercial. Through those experiences, he has met families who are beginning the same journey his family once faced. "Six years ago, we were the family looking for hope," Emily said. "Now we're able to give that to other people."
That's a role Arlo takes seriously.
In fact, whenever he visits a local children's museum exhibit that asks kids how they plan to change the world, his answer is always the same. He wants to be the best ambassador Shriners Children's has ever had.
What the Future Holds
Arlo's future goals are already taking shape. When he grows up, he hopes to become either a doctor at Shriners Children's or a prosthetist, helping children the same way his own care team has helped him.
Those dreams are a reminder of how far Arlo has come. “We were so scared in the beginning, like, is it going to be a different future for him?” Emily said. “And it’s not.”
The questions that once filled their minds – Would he walk? Would he be able to do the things other kids do? – have largely been answered. Now, the focus is on Arlo’s future. "When I think about the future for Arlo, I see endless possibilities," Emily said.
Today, Arlo doesn’t give any thought to any limitations he might have. He simply enjoys being a kid. “Because of Shriners, I don’t think about what I can’t do,” he said. “I think about all the things I can do.”
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