Born with a congenital anomaly that resulted in the amputation of his left leg and the relocation of his toe to his hand to serve as a thumb, Ezra Frech’s life as a toddler would appear to be wrought with challenges and trepidation; however, at the tender age of five, he’s already proving to the world that challenges make you stronger and differences make you shine. October 22-24, Frech competed in the Challenged Athletes Foundation (CAF)’s San Diego Triathlon Challenge kid’s run where he was recognized with the Rising Star Award for his demonstrated commitment, dedication and focus to meet an athletic goal. Frech competed in his first CAF event last year one month after receiving his first running prosthetic leg from California-based Hanger Prosthetics & Orthotics practitioner Ryan Russell.
An above-knee amputee, it would be easy for Frech to define himself through the obvious; however, his physical disability is the last thing you notice about this charming little man. Since receiving his first basketball at just 1-year-old, he’s dribbled, passed, and shot his way past able-bodied opponents two to three years older than him. He doesn’t watch cartoons; he plays hoops for hours on end and watches basketball – especially the L.A. Lakers, his favorite team. Ask him about the Lakers and he’ll quickly rattle off all the players’ names and their stats. Frech was even featured on Good Morning America earlier this year when he got to meet his idol L.A. Laker Pau Gasol.
Beyond athletics, Frech continually impresses all around him by his wise and inherent understanding and acceptance of what makes him different. When Frech received his first prosthetic leg at 11-months-old, he immediately started walking and never looked back. Before he was two-years-old, Frech identified his differences on his own and asked his parents many questions about his partially-formed leg and hand. After his intense 14-hour leg amputation and hand surgery, Frech endured more physical and occupational therapy than most adults could handle – all the while exhibiting patience, focus, and optimism. Now at five-years-old, Frech is a natural at explaining the functionality of his prosthetic leg, or “helper leg” as he calls it. He has even twice taught a course on embracing differences in front of classrooms full of students his own age and older. Simply by living his life, he inspires others – from children to 60-year-old men just learning to accept a recent amputation due to diabetes. His smile, energy, and confidence make difficulties easier for others. Frech’s story needs to be told again and again; his influence will defy stereotypes and promote acceptance of differences.
"Baby Ezra: Transcending Genetic Limb Differences" -As told by his dad, Clayton Frech
The most amazing person I know is my son, Ezra. At the age of four, his wisdom, maturity and empathy reach a level far beyond his years. He is an old soul. Ezra’s emotional depth helps him---and our family---navigate the challenges and opportunities of his young life.
Ezra was born with a partially formed left leg and left hand. His left leg did not have a knee or a fibula, and instead of extending downward, the lower part of the leg was curved back up along the inside of his thigh. His left hand had one functional finger, which looked like two fingers fused together, and a small pinky finger. My wife and I were unaware of Ezra’s differences prior to his birth. Of course we fell in love with him the moment he was born, and we were worried that he might have additional health concerns. Before we brought Ezra home, the bio-geneticists at the hospital informed us that Ezra had femur-fibula-ulna syndrome (FFU), a very rare genetic condition. Fortunately, FFU only impacts the development of bones in the forearm, thigh and calf. Otherwise, Ezra was a healthy, beautiful baby boy.
From the very beginning, we benefited from the great advice of a number of wise doctors. The first two orthopedic surgeons that saw Ezra in the hospital were reassuring. “You’ll be chasing him around just like any other kid,” they said. They went on to explain that when he was a little older, we would probably decide to have the lower part of the left leg removed and get him a prosthesis. They even suggested that we should transplant a toe or two from his left foot to his left hand, which would give him significantly better hand function. So we left the hospital with a tremendous amount of peace that he was healthy and he would be okay.
Right away we started noticing things about Ezra that were unique for a newborn. He was extremely alert and aware. He recognized and responded to our voices in the delivery room. His eyes were bright and focused, and when I walked around the room, he tracked me. After we’d been home a few days, his pacifier fell out of his mouth, and with his left hand, which only had one functioning finger, he put it back into his mouth. Most babies are able to do this at about nine months. When Ezra was only seven months old, he started talking, and his first words were “car” and “ball.” By his first birthday, he probably knew a hundred or more words.
Our pediatrician referred us to Shriners Hospitals for Children in Los Angeles and they admitted us when Ezra was two weeks old. When he started to pull himself up to stand at about 10 months, they made his first prosthesis. Because the lower part of Ezra’s left leg was curved up against his inner thigh, the socket of the prosthesis had to encompass his entire leg and his little foot. The first time he wore his prosthesis was a magical moment --- he instinctively knew what it was for and immediately started walking around a table. We have a video of him taking his first independent steps when he was about 12 months old.
My wife and I spent over two years searching for a hand specialist who could articulate a clear vision of what Ezra’s hand should look like and what that surgery would entail. We knew that from a technical standpoint, the leg amputation would be relatively simple. However, when it came to his hand, we were looking at a much more complex procedure: transplanting a toe from his left foot on to his left hand so that he might have an opposable finger. Both surgeries---the toe-to-hand transplantation and the leg amputation--- would need to be performed simultaneously.
Ultimately, we went with Dr. Upton at Boston Children’s Hospital. Dr. Upton first met Ezra before he was a year old and observed him at play, watching how he used his left hand. Later, when we went to Dr. Upton’s office, there were shelves of before-and-after models of the hands he had worked on over the course of his career. The hand models made it a lot easier to talk about the details of Ezra’s hand and to visualize how it would look. It was the kind of thorough approach we needed to feel confident we were doing the right thing.
When Ezra was two and a half, we scheduled the surgery in Boston. A team of surgeons performed the amputation and the transplantation of his big toe to his hand, taking the veins, nerves and tendons and connecting them into the hand. The surgery, most of which was completed under a microscope, lasted 14 hours. A couple of days later, Ezra was able to move his new “finger” a little, and after six months, he could bend it and pick things up. My wife spent countless hours preparing for the surgery and working out how we were going to talk to Ezra about the operation, before and afterwards. She created a book that explained what was going to happen, and she had a very specific game plan for how, when and where we would explain to him what was going to happen. This was such a challenging time, and I firmly believe that two factors saw us through: Ezra’s resilience, and his mother’s pre and post-surgery preparation.
Although both the amputation and the transplantation went very well, we worried about the big challenges that loomed in front of our little boy. In addition to being a kid with a prosthetic leg and a different hand, he now had to teach a new appendage to work. His brain had to rewire that toe and teach it to behave like a finger.
As soon as Ezra’s residual limb healed, he was fit with a new prosthesis at Shriners back in Los Angeles. His leg fit into the socket much easier now. Even though he was an above-knee amputee, we opted to stay low-tech and not include a knee joint. Ezra was used to wearing a prosthesis without a knee. He was steady on his feet, very mobile and didn’t have to think about learning to use a knee---he could just run and play as a three year-old. At that time, we were also more focused on allowing Ezra’s new finger to heal and fuse completely. We wanted the hand function to be really strong, and we were concerned that if he was learning to use a knee, there would be some hard falls and his hand could be injured. Ezra made steady progress with his hand, thanks in part to an intense weekly regimen of physical and occupational therapy.
When Ezra was almost four years old, we welcomed the arrival of our second son, Gabriel. Ezra is a wonderful big brother, very loving and accepting. Ezra graciously allowed us to move his baby toys into Gabriel’s room, and he makes Gabriel laugh by fake sneezing. Gabriel adores his big brother, following him around and trying to play with him. In fact, Gabriel’s first word was “Ezra.”
In August 2009, our family went to Camp No Limits for children with limb loss and their families. Ezra was still using a prosthesis without a knee, and seeing above-knee amputees running and jumping with a prosthetic knee was a motivator for us. When we got back home, my wife and I decided to call Hanger and see what they could do for Ezra. He received his first prosthesis with a knee in September of 2009, and one month later, he received a running leg. Since then, we’ve been swept up in a whirlwind of positive energy and outcomes.
Ezra’s “everyday” prosthesis consists of a roll-on locking silicone liner, a polycentric knee joint and an energy-storing foot. His running/sports prosthesis features a high performance Flex Run foot. His gait, mobility and agility have all improved dramatically. And more importantly, Ezra is proud of his new high-tech legs, confidently showing them off and explaining how they work. It only took him a day to figure out how to walk with a knee, and once he got used to the running leg, he was pretty much unstoppable. On the way to dinner to celebrate his newfound ability to run, he started sprinting down the sidewalks. He’d never run that fast before and he wasn’t going to stop anytime soon! The wind was blowing his hair back and he had the most gleeful smile on his face. It was a beautiful moment. Two days later, he debuted his running leg at a Challenged Athletes Foundation (CAF) Half Ironman event in La Jolla, where he participated in the kid’s run.
Ezra runs, plays basketball and “trains” with older amputee athletes like Paralympic runner John Siciliano. Ezra is used to people checking him out, mainly because his prosthesis is so eye-catching, with a Los Angeles Lakers’ logo featured prominently on the socket. The socket of his running leg has a picture of Pau Gasol, his favorite Lakers player. If anyone asks, Ezra has an amazing ability to explain why his hand and his leg are different. His left hand is working just as well as we had hoped. He can even pick up a piece of paper now, and before the surgery, he couldn’t hold anything unless it was pressed against his body. Every time we see him pick up or hold something with his left hand, it seems like a miracle. Having a functional hand is a huge gift in his life. Truly, these are inspiring days for our family!
Feel free to join Team Ezra on Facebook or learn more about Ezra at www.teamezra.com