There’s a glass jar in 13-year-old Erica Silvey’s household that contains the monetary penalty for saying the word “can’t.”
It holds only a quarter. She has said the forbidden word once.
Asking for help is permissible, but “can’t” has been off-limits for the cheerful girl born with fibular hemimelia, a birth defect that required below-the-knee amputation of Silvey’s left leg at 10 months of age.
By 13 months old, Erica was wearing her first prosthetic leg. At 5, she began playing soccer.
And she did just about anything else she pleased since “can’t” was absent from her vocabulary.
“There are initial hesitations — is she going to run like the other kids — but nothing stops her,” said Erica’s mother, Laura Silvey. “She’d be the first one up a tree, the first one on the playground to get to the highest point. Even if her leg fell off, we’d make her figure out a way back down. I think that’s the biggest thing is not giving your kid limitations and never putting that into their mind.”
Point of origin
Fibular hemimelia’s primary characteristic is a complete or partial loss of the fibula bone. The tibia and fibula exist side by side in the lower leg and attach to the femur via the knee. The tibia fields the weight-bearing responsibility in the lower leg. Without the fibula, or most of the fibula, the tibia becomes bowed and creates unstable pressure on the ankle joint. A partially formed foot is also common.
Also known as longitudinal fibular deficiency, the congenital birth defect that typically arises during the first two months of fetal development usually results in two options: Amputation and a prosthesis, or multiple surgeries to lengthen the leg and reconstruct the affected foot.
According to a 2006 case study in the Journal of Ultrasound Medicine, fibular hemimelia affects boys twice as often as girls. There are 5.7 to 20 cases per one million childbirths.
“As soon as you can, get with people that have experienced the same,” said Laura Silvey, who was a pediatric nurse at the time of her pregnancy. “Find mentors. Get your children involved in camps. Don’t baby them. Let them fall and fail, because that’s going to inspire them.”
Normal from birth
Laura Silvey speaks with confidence, having seen her advice play out over the last 13 years.
She never worried about her unborn daughter’s future, even after seeing the first ultrasound that showed some sort of musculoskeletal deformity. Erica was subsequently born with no fibula.
Two things happened, providentially her mother believes, to help set her at ease. The first, the week after the initial diagnosis, was catching a week-long series of television episodes on TLC depicting the normal lives of children with amputations.
“I watched a child with bilateral fibular hemimelia play hockey and do all these things,” said Laura Silvey, who showed her husband Joe what she thought their daughter had. “It was kind of like, ‘OK, no big deal. Let’s just see.’ It was reassurance.”
The second happening was randomly catching an episode of Ripley’s Believe It or Not.
The Ripley’s episode showed a doctor successfully operating on a girl with sirenomelia, also known as mermaid syndrome for when two legs are fused as one. The next day they met their doctor for the first time. He was the same doctor.
“TV spoke to me,” Laura Silvey said with a laugh. “I said to him, ‘I saw you on TV last night.'”
Erica has performed gymnastics and played softball and soccer, in addition to trying all sorts of outdoor activities.
“I just work my best and hardest and don’t even worry about it,” Erica said. “I adjust accordingly.”
It took Erica a while to balance on her prosthesis. In soccer, she always stood on her right leg and would kick powerfully with her left. As she grew more accustomed to the metal limb and her upper leg and knee joint got stronger, balancing on the left and kicking with the right made Erica just as comfortable using either.
Dribbling with a soccer ball is dependent on touch and feel, something Erica has to focus more on when the ball hits her left cleat that covers the prosthetic foot. As she practices more, she gets the hang of how to replicate it time and again, but it admittedly doesn’t always go according to plan.
“I watch where the ball hits my foot, so I know where it is, and then I just take it and dribble with it,” said Erica, very matter-of-factly.
Shriners Hospital in Tampa, where she was born and had her amputation and three previous surgeries, has outfitted Erica with free prostheses. Top-of-the-line designs can run up to $20,000. Locally, the Silveys have been helped by Williams Orthotics.
At some point in the near future, as her growth spurts end, Erica will need a fourth but likely final surgery. The knee surgeries involve plates and screws to strengthen the lower leg bone that wants to grow crooked.
Soccer motivated Erica to get back following her last surgery in May of 2014.
“We knew she was going to be just fine,” her father Joe said. “Definitely, nothing stops her.”
Ability, on and off the field
Patricia Smith, 13, has been playing with Erica for the last four years. The two are part of Tottenham Hotspur Tallahassee’s 15U Select team.
In Smith’s first encounter with her friend at 9, she heard there was a girl without her leg who would be playing with them. After going through all kinds of drills, it finally dawned on Smith that Erica was that girl.
“We didn’t even know she had a prosthetic leg,” Smith said. “She can kick hard, with one foot or both.”
Last month, Erica was named the US Soccer national player of the month for June. During the winter, Erica scored 22 goals from her starting center forward position and in the spring was the only opposing player to score on her current Tottenham Hotspur Tallahassee team.
But she was also recognized for her intelligence and off-field contributions. Erica took first place in Leon County and third in the state at the Florida History Fair in May for a project on Paralympians. Erica’s project educated her peers about Paralympic founder Sir Ludwig Guttmann and how he changed the world for people with disabilities through sports.
In addition, after a deadly 7.0 magnitude earthquake hit Haiti in 2010, Erica empathized with the plight of kids who had suffered limb loss in the devastation. The Silvey family was attending a Tallahassee Haiti-Medical Team fundraiser when one video of a boy without legs, holding a typical white doll, elicited a response from Erica toward her mother.
“Mommy, he needs a brown doll with no legs,” Laura recalled her daughter say. “We had adapted her animals and dolls when she was little, which is another important thing to do.”
Erica set out to do just that, and with the help of her mother’s friend and their church, the Silveys constructed 20 culturally accurate dolls with limb loss and brown skin to send to the impoverished Caribbean country.
Erica dubbed them “Nubby Dolls.”
“I just wanted to do something for them because they were in lots of pain,” Erica said. “They were able to look at them and see that people actually cared about them.”
The feedback was strongly positive amid the heartache. In response to the letters Erica mailed with the dolls, those Haitian children that were affected displayed a gratitude towards something that more than acknowledged their disability.
It normalized and celebrated it.
Attitude for the future
Erica will tell you that she sees everyone as equal, whether they have all their limbs or not.
Her friends act as if she has all her limbs. Camps, such as NubAbility or Camp No Limits, offer chances to further integrate into society.
Still there are things Erica will have to overcome on the soccer field, some of which is out of her control. Under existing rules, it is up to each game’s referees whether she is allowed to play, even though she has sufficient padding around her titanium leg.
Her family has cut pool noodles that cover the leg to keep others from getting hit. Her parents expressly coach her to avoid goalkeepers.
It remains unclear what the FHSAA’s judgment would be when she enters high school.
Regardless of what rulings are made, Erica’s goal is to follow the path blazed by her role model Carson Pickett and play for Florida State.
Whether that ultimately happens or she winds up at another university – there’s no evidence to suggest it otherwise won’t happen – Erica’s attitude remains unchanged.
“I don’t give up easily because I keep trying,” she said. “I have the motivation to do it.”
And that is something both disabled and able-bodied individuals get full control over.
“You can do anything, no matter what. I just want to play soccer,” Erica said. “You can always go for it. You don’t have to stop, no matter what comes your way.”