FROM FALL 2016 ISSUE
All young ladies dream dreams: but while 16-year-old Rachel Buckley is dreaming, she’s also busy designing cities and kicking soccer balls with an energy and enthusiasm that raises the bar for her peers. Instead of slowing her down, the prosthetic leg and soccer-customized Cheetah foot she wears seem to motivate Rachel not only to keep up with her able-bodied teammates, but to do more—and do it faster and better every time.
Rachel’s leg loss occurred as a result of twin-to-twin transfusion syndrome (TTTS), a disorder which occurs when the blood vessels of the babies’ shared placenta are connected. Rachel and her identical twin sister Kim were affected by the unequal sharing of blood between them; Rachel got too much, while Kim got too little. Rachel experienced congestive heart failure in utero from the excess blood to her heart; a blood clot that likely developed in the placenta and traveled from there to the back of her right knee blocked blood flow and caused the necrotic leg she was born with.
The twins were born at 31 weeks, when Rachel weighed two pounds and fourteen ounces, and her leg was amputated two weeks later. Kim’s normal development was not affected.
A random event that cannot be prevented, TTTS occurs about 15% of the time among identical twins; fraternal twins are not at risk because they do not share a placenta. Until recently, TTTS often claimed the lives of both babies, but current technology provides successful treatment options once the syndrome is detected.
Rachel received her first prosthesis when she was just 10 months old, at the time babies normally begin pulling themselves up to stand. Her parents, Dan and Sue Buckley, report that she didn’t walk on her own until she was about 22 months old—a slight delay from the normal timeline. “She just had to get the confidence to let go of a hand or wall,” Sue explains.
Her first prosthetist, Harry Lawall Jr. (Bud), provided her with several of the 14 prostheses she has already worn in her lifetime. His death when Rachel was 10 years old was a difficult blow for her, Sue reports. “He was great—absolutely great—and losing him was rough for her.”
During the following years, Rachel has received her prosthetic care primarily from Jack Lawall.
“I’d say they (the Lawalls) are probably my second family!” Rachel exclaims. “They’ve helped me with so much over the years. They’ve made me the person I am today, being able to play sports and use my leg.”
Adjusting so many times to a lifelong series of prostheses has really not been difficult from Rachel’s perspective. “It’s pretty much the same story each time. When I was
11 I was changed to a different knee, and that took a little longer; but overall, I just did what I usually do, and adapted to it.”
Apparently practice makes perfect. “Jack Lawall has always said they could probably just put a stick on my leg and I could walk on it in 15 minutes!” she laughs. “I guess I’ve learned to be adaptable.”
Lawall agrees. “Rachel is an amazing patient: very energetic, friendly, outgoing; and nothing stops her!”
Adapting for Soccer—and Much More
Soccer is just one favorite of the many sports and activities that Rachel has tried. She began playing at age four, and sister Kim quickly joined her on the field as a defender. Rachel got a running leg so she could run and keep up better on the field, but although she loved the bouncy feel of the energy-storing Cheetah foot, its J-shaped single carbon strut was not designed for kicking the ball.
Jack Lawall initially realized that the Cheetah foot answered her need for sprinting and moving side to side quickly; but attempted kicks using the bare curve of the prosthetic foot usually resulted in the ball just rolling over the top of the foot—a frustrating failure.
Known for developing creative solutions to solve unusual patient problems, the Lawall team customized a fitted cover of very strong and durable leather, which Rachel could take off and on, as needed.
“We have four full-time leather craftsmen in our custom leather department,” he noted, “so we were able to design and make the shoe very quickly—in about three days. The job of orthotists and prosthetists is not always straightforward; often you’ve got to think outside of the box like this in order to help people, and we enjoy that challenge.”
Although the foot with its added leather weight felt heavy and somewhat awkward during her first attempt to use it, true to form, Rachel is determined to give it another try and believes she can get used to it.
Sue acknowledges that Rachel was probably much more aware of the weight difference because she started the game with her regular leg, and tried to switch it out mid-game.
“Now that it has the solid foot, it works a lot better,” Rachel adds. “I tried it a little bit and it does seem to work out really well; I’m thankful for that,”
The twins are the youngest of the Buckleys’ five children, all of whom have been active in sports and continue to set a supportive example for the twins. Brother Danny is oldest, at 27; followed by Amanda, 25, and Lyndsey, 22—who plays softball competitively and alongside her mother Sue.
“Rachel has always wanted to be as active as her siblings,” Sue explains. “When they were little, she took gymnastics. She took dance. They watched Lyndsey and me playing ball since they were born, and Rachel was actually first, at three, to start in T-ball, and her twin joined her soon after that. She loves almost any sport; it’s her favorite thing to do.”
An eager learner, Rachel also serves as a mentor to others, supporting Lyndsey, who coaches eight-and-under-softball. “Rachel loves to go and hang out with them and sort of coach and help out,” Sue explains.
Her enthusiasm for exploring new and different athletic pursuits appears inexhaustible– Rachel is eager to try a world full of new possibilities that are open to her—and to approach doors to others that might open, if only she tries. Her mother mentions tennis, kayaking, hiking, and much more:
In fact, through a recent experience at an Amputee Coalition summer camp, she has added yet another interest: sitting volleyball. The U.S. Paralympic team came to the camp and demonstrated the sport and let the campers play—and now the Buckleys are hunting for a site and opportunity where Rachel can gain more experience in the sport.
“She always gives it a shot,” Sue notes, regarding any new idea or opportunity for sports and recreational fun. “We’ve never discouraged her. We’ve tried rock climbing with and without the leg,” she laughs. “Sometimes she does better at things without the leg, because it can be a hindrance.”–and if she doesn’t succeed the first time, she tries again—if not boldly and immediately, then later, with determination and persistence undaunted by injuries.
“She ends up in the goal a lot when playing soccer, because it doesn’t involve running—and she’ll dive for the ball. She’s been sort of falling all her life, and so she knows how to fall safely,” Sue explains with wry humor.
Although soccer and softball are favorite sports in season, Rachel confesses that, forced to choose a favorite, she’d probably pick surfing, even though she hasn’t been practicing much.
It’s been a dream of hers since she was inspired by the experience of professional surfer Bethany Hamilton, who lost her left arm in a 2003 shark attack, but recovered and continues to compete successfully. Hamilton has quite a fan following—including Rachel.
Her third surfing lesson was disastrous, however. She fell off the board near the shore, and a wave slammed it into the back of her head, giving her a concussion that kept her out of school for eight weeks.
Is that the end of surfing for Rachel?
“I have a bit of anxiety,” she admits, “but I definitely want to get back out there!”
Taking Obstacles in Stride
The surfing setback was only one of a number of accidents, falls, and injuries that Rachel has experienced and risen above, Sue reports.
“Rachel was in the ninth grade, recovering from the concussion and ready to go back to school, but decided to go golfing first. She had ulnar nerve issues and irritation—aka ‘golfer’s elbow’. She ended up in surgery, having her ulnar nerve transposed.”
Again, during the same 9th grade year, Rachel underwent surgery to get nerves oblated in her back in order to eliminate some of the discomfort she was experiencing as a result of her legs being different lengths, and her tendency to hop around without wearing her prosthesis, at times, her mother reveals.
Despite pain, discomfort, and physical limitation, she’s always in there, trying her best and trying to make a difference. One of her coaches told the team following a recent soccer game, “If everybody on the team had given as much as Rachel did tonight, we would have won!”
Her fearless “can-do” attitude in the face of obstacles and painful setbacks is an inspiration to others; and, conversely, the feedback she receives from others who respect her extra effort inspires her, as well.
“Last year I played soccer against another town, and the coaches came up to me and said, ‘Never stop doing what you do’ and told me how I always inspire them,” she recalls. “Even during the handshakes following the game, sometimes (competing) players will just say, ‘You inspire me,’ or ‘You’re amazing!’—and that really makes me feel good. I just want to be able to play with them, but it feels very nice that they acknowledge me for what I do.”
“Rachel has done pretty well because she’s dealt with this all her life,” Sue reflects. “At camp she met some people who lost their leg later in life, and I think she sees that it can be a little bit more difficult to adapt to at that point. But we’ve seen people be successful then, too; so even if you’re in that situation, I think she would encourage you: Believe you can do what you want to do; you just have to work at it.”
“Definitely!” affirms Rachel.
Throwing one’s heart, soul, and body boldly into the fray can be stressful to one’s prosthesis, as well, however, and Rachel has experienced her share of “broken legs”—a family joke shared each time the prosthesis succumbs to excessive use. While she has a prosthesis for daily use, one designed for the beach, and the running leg with Cheetah foot, it’s difficult to ambulate with the wrong foot for the job.
When Rachel breaks her leg, Sue warns, “…it’s a good idea to have a pair of crutches handy; this is something that happens. People have recommended the computerized leg for her, and they are wonderful! But she’s going to break it. She’s
tough on the legs, so the simpler, the better, at this point.”
What Lies Ahead?
At 16 1/2, Rachel is preparing to take on yet another new challenge—both twins are learning to drive, in a car of their own. And Sue explains that what is a simple process for her sister has been a “little ordeal” for Rachel.
“We found that in order to get a driver’s license in the state of New Jersey she has to go through a rehab center and have special driving instructions and be cleared medically—and getting things scheduled at their limited locations has been a little difficult. The state also requires her to have a different license and an adaptive pedal that activates the accelerator.”
Her mother, a medical technologist, has gained a lot of experience in surmounting such obstacles, and is happy to share her knowledge with others.
She has supported the March of Dimes each year for 13 years, because the twins were preemies in the NICU. “Rachel and Kim always march along with me—living proof that whatever happens after they get out of the NICU, you still move on—and there’s a future for a lot of these children, and they do well,” Sue explains.
“I’ve always been very open about other kids showing interest in Rachel’s ‘robot leg’. It’s okay—they can look—they can ask. They shouldn’t be afraid of it. They should ask about it and understand it. When she first started kindergarten, they asked if I wanted to come in and talk to the class about her prosthetic and I said, ‘No—let her do it. She knows about it.’
“So they had a little show and tell session, they asked questions and that was it.”
Such family activism, and the positive influence her parents and siblings provide, have played a significant role in developing Rachel’s clear-headed and practical outlook on life: The toughest thing about wearing a prosthesis, she says, are not social or psychological issues, but purely logistic problems like how to deal with excessive perspiration issues that sometimes cause slippage in the prosthesis’ socket that causes its vacuum attachment system to fail. (Lawall is already addressing potential solutions that involve prescription-level antiperspirants and/or a new liner.)
“They always work with us with her craziness!” Sue laughs.
“I’m so blessed,” Rachel adds. “Everyone treats me just the same. I have heard of people getting bullied, but I’ve actually never, ever had a problem with that.” Her family has always done what families do for each other: “They’ve treated me like a normal person,” Rachel says earnestly. “They let me fend for myself. Sure, they ask me if I need
help sometimes, but they’ve let me adapt, and given me that help when I needed it. Overall, I’m thankful that they have let me grow into the person I am today—and be myself.”
To others with limb-loss limitations, she says simply, “Never give up. Definitely never give up. You can really do anything with the support of others—and your own self will.”
What Hasn’t Rachel Tried?
A list of the sports and active pursuits Rachel has tried would require a lot of type: a list of the sports and active pursuits Rachel hasn’t tried might be easier and shorter—but here’s a sample of what she’s already done for fun:
• Hiking • Tubing • Boating • Kayaking • Trampolining • Biking • GoKarting • Surfing • Laser Paintball • Soccer • Beach Biking • Softball • Ice Skating • Swimming • Bicycling • Tennis • Archery • Fencing • Fishing • Parasailing • Supporting the Phillies!
In between, she has ridden a Segway hoverboard through the streets of Philadelphia, attempted snowboarding, wakeboarding and skateboarding, and piloted an airplane. She’s shared family fun on trips to museums, arboretums, concerts, monster truck rallies, and more. She continues to explore her artistic talent, designing the original motif that adorns her prosthetic leg, and preparing for a possible career as a civil engineer by learning to design cities and the buildings that comprise them.