“I’m just wondering if you’d like to change my 9-year-old daughter’s life?”
That was the email Jeromy Wicker sent to a handful of strangers this year pleading for help.
The 34-year-old father’s mission was simple. He wanted to take a bad situation, the pressure his daughter was starting to feel because she was born without fingers on her left hand, and turn it into a good one: a plastic prosthetic device that would help Kylie gain function and take her mind off the negative attention she was getting.
The family’s journey is a testament to the spirit of giving, educational innovation and the impact of increased access to technology.
Kylie Wicker sat in a classroom May 9 at Boylan Catholic High School and made a fist for the first time with her “left hand,” a purple Robohand made especially for her by Boylan students. The students downloaded the design off the Internet for free. The parts cost less than $10.
Sharon Wicker’s eyes welled with tears as her daughter opened and closed the four fingers and thumb with a slight bend of her wrist.
“I didn’t think I’d be so emotional,” she said. “It’s just overwhelming to see.”
She never used being born without left-hand fingers as an excuse.
The Roscoe girl is a cheerleader. She rides a bike, climbs monkey bars and jumps rope. She finds a way — a curl of the wrist, a little more elbow — usually with a smile on her face. But something was changing.
Kylie was used to snide remarks and stares at the beginning of the school year. After a couple of weeks with new classmates, the novelty of her one-handedness typically wore off. This year was different. It was March, and the pony-tailed third-grader was coming home from school in tears.
Jeromy and Sharon watched helplessly as their happy-go-lucky girl grew increasingly frustrated and self-conscious. They talked with her about what to say if kids pointed and stared or called her names. Some kids can be mean, they told her, but some don’t know that they’re being rude. They’re kids, too, and Kylie needed to help them understand.
“I would tell her that she needed to tell them that it hurts her feeling when they stare at her hand,” Sharon said. “And she would say, ‘But then I would hurt their feelings’.”
Desperate for more advice, Sharon turned to the Internet.
Kylie’s birth defect is rare: 1 in 1,200 to 15,000 births, depending on the cause. For the first time since Kylie was born, Sharon sought out other parents. Maybe an online support group contained advice on teasing.
Sharon found a couple of chatrooms, but they offered little more than what the Wickers already had discussed.
The 32-year-old mother of two wasn’t about to give up. She kept looking, Googling things like “born without fingers” and “amniotic band syndrome,” which is similar to what Kylie has. That’s when she saw the video of Liam Dippenaar of South Africa.
In the video, the 5-year-old uses Robohand, a plastic prosthetic designed by an American special-effects artist and a South African carpenter who had lost his fingers in a saw accident.
Liam gleams as he picks up a ball and holds a pencil using a device that looks like a wrist splint with four artificial fingers and a thumb at the end. Seeing another child with the same disability as Kylie use the Robohand with such ease took Sharon’s breath away. The last piece of information on the video made her heart skip a beat: The Robohand is made using a 3-D printer, and the design is online for free, for anyone to use, something called open sourcing.
Medical prosthetics cost $5,000 to $50,000 each. Children rarely get them because they grow out of them. Because of the low cost, a Robohand can be replaced as children grow and technology advances.
Sharon emailed the video to her husband. When Kylie and her older sister, Kailyn, got home from school, Sharon played the video again.
“I’ll never forget her face,” Sharon said. “She just turned and looked right at her sister with this big smile.”
“It was the best thing I ever saw,” Kylie said. “I was so excited. … I knew I wanted one.”
Rejection, red tape
As far as the Wickers were concerned, the timing was perfect.
“I had just come from work the other day and saw Kylie crying,” Jeromy said. “I asked Sharon what happened and she told me about something a girl had said to Kylie. … I don’t like to see (my kids) hurt. When they hurt, you hurt. … We wanted to do something to lift her spirits.”
Jeromy, who works in construction, had heard about 3-D printers but never used one. He found the website for Makerbot, makers of the Replicator 2, the machine used to make the Robohand. The going price was about $2,000. “I thought, ‘I’m going to buy one of these right now.’ … And then I realized that we had just paid for a vacation we were taking over spring break,” he said. “So then I thought, ‘I need to find another way to do this.’ That’s when I started looking for people who already had 3-D printers.”
He found a handful of schools in the area that had them, mainly for engineering and computer classes. Each time he located a printer, he sent an email with his appeal for help. The first school responded positively. A teacher asked to see the video of Liam. Jeromy sent it. The school loved the idea but wanted to do it the next school year. That was too long to wait. He sent more emails.
I'm just wondering if you'd like to change my 9-year-old daughter's life? - Jeromy Wicker
Another school responded positively. That teacher asked for the video and the link to the open-source design. Jeromy replied, but when he failed to hear back right away, he sent one more email — to Boylan’s technology coordinator Brad Frisch.
The next day, the family left for vacation, and Jeromy’s email started circulating at Boylan.
From zero to 60
One of the people who got Jeromy’s email was engineering instructor Bud May.
May, a former information-technology specialist for Ingersoll, went to the Internet to learn more about the Robohand. He read a few articles, as the Wickers had, and found the design on Thingiverse, a website that compiles open-source programs for 3-D printers, everything from Lego pieces to key chains to Robohands.
Unlike the Wickers, May sat 10 feet from a Makerbot Replicator 2, a recent gift from the family of a former student.
“The design is so simple and to have it out there in open source so the people who can benefit from it don’t have to pay a ton of money to get one,” May said. “I was fascinated.”
The Wickers were still on vacation when May replied. He asked when Kylie could come in and meet the 10 students in his engineering graphics class, each eager to build a Robohand for her.
May’s students had used the 3-D printer and the engineering software program SolidWorks for past projects. They made plastic crosses and Christmas ornaments. The Robohand was a big step forward. It had moving parts. The device’s plastic fingers and thumb clenched and straightened based on wrist motion.
May asked an engineering friend to take a look at the design — partially for technical advice, partially to make sure that he and his students weren’t getting in over their heads. The friend assured May that his students were up for the challenge.
“Basically, it went from ‘Maybe next year’ to ‘We’re already working on it’,” Jeromy said. “We were so excited to get home.”
Something prevented the fingers and thumb on Kylie’s left hand from developing in the womb, but no one knows exactly what happened. Not her parents or any of the doctors the Wickers saw in the years after her birth.
Sharon’s ultrasounds showed no signs of anything being wrong.
Kylie’s hand is similar to hands of people with amniotic band syndrome — when a portion of the amniotic sac breaks away from the sides of the womb and wraps around a limb, stopping the blood flow. Those children tend to have a crease in their skin where the band took hold and cut off circulation. Kylie doesn’t.
“We did the whole doctor thing,” Sharon said. “They all said the same thing, something just went wrong. … It was kind of a shock, because no one in our family had anything like this before.”
The good news was that Kylie was otherwise perfectly healthy, Sharon said, and the condition wasn’t going to cause any health problems down the road.
A couple of years ago, the Wickers took Kylie to a different doctor to explore surgical options. , They were interested mainly in ways to help Kylie increase functionality.
That doctor suggested an operation to remove toes from Kylie’s feet and insert the bone into her hands. Then would come more surgeries to lengthen the bones until they became the length of fingers. Kylie would have the appearance of fingers, but she wouldn’t be able to bend them. They would stick out straight. Add to that the pain the surgeries would cause in Kylie’s hands and feet, and the Wickers ruled out the surgical route.
“Right now, she doesn’t have pain,” Jeromy said. “If we did that, we would put pain in her feet and her hands. … It didn’t seem like it was worth it.”
In the meantime, the Wickers inquired about a medical prosthesis. Jeromy’s insurance would cover about 80 percent of the cost, but only once in Kylie’s lifetime. That meant waiting until she was grown.
“We never thought she’d get something like this until she was much older,” Sharon said. “We didn’t think it was possible.”
The family finally made it to May’s engineering class. April 23 would be the first of several visits to be measured and fitted for the hand and for the sleeve that goes around the lower arm and wrist and holds the hand in place.
Students loaded Kylie’s measurements into the Robohand program, and the 3-D printer churned out 19 pieces. The students assembled the hand using screws, cords and cables.
May let his students take the lead as much as possible to maximize the project’s educational value.
“I’m here to show the students the design and introduce them to the family,” May said. “I want them to do as much of the work as possible for them to learn, but also so they’re a part of this. … We have this fantastic little family with their cute little girl. She’s just beaming, and you’re making her happy. It’s just infectious.”
The class decided to make two hands, with one as a backup in case the other broke.
Kylie asked for purple and pink, her favorite colors.
Kylie’s family and friends, plus a dozen reporters and photographers, were at Boylan on May 2.
They were expecting to see Kylie wiggle her new plastic fingers for the first time. Instead, they witnessed a lesson in engineering.
The fit of Kylie’s hand was wrong, and the fingers wouldn’t move. The students would need to take new measurements, take the hand apart and put it back together.
“We learn a lot in our engineering class,” junior Alec Steinhagen said. “One of those things is trial and error.”
The failed presentation turned into a great teaching moment, May said.
“If it was right the first time, I probably would have said, ‘Hey, what’s wrong?’ … When students design on the computer, things don’t break. You get red spots on your screen that show you your interferences. In real life, you don’t get red dots. Things just don’t work, and you get to figure out why.”
Moment of truth
It took the class a little more than two weeks to finish Kylie’s first hand.
Everyone — friends, family and media — returned a week later for the second attempt.
The students made a number of adjustments. They selected a different kind of cable, one that wouldn’t slip so easily. They widened the sleeve around the wrist so there would be room for padding.
This time the hand fit, and it worked.
“Cool,” Kylie said as she watched her Robofingers curl into her palm.
“I’m going to learn to throw. I can grab onto stuff. I can fist-bump,” Kylie said, excitedly rattling off her weekend wish list, which included riding her bike and jumping rope “with two hands.”
“I couldn’t be happier. It’s very cool.”
Around the world, groups similar to May’s engineering class are making Robohands for people like Kylie. More advanced designs are being developed. Those, too, are being posted on the Internet via open sourcing.
In a 2013 interview with Makerbot Industries, a Brooklyn-based manufacturer of 3-D printers, Robohand inventor Richard Van As of South Africa reflected on the device he created with Ivan Owen of Washington state.
“Maybe Robohand took the 3-D printing world by surprise with what we’ve done with it, but if you have a look at the broad spectrum of it, printing a mechanical device that can aide you when you’ve lost fingers is a tiny little part of it,” he said. “It’s a big, big picture this 3-D printing.”
In a 2014 Tedx Talk, Owen elaborated on his collaboration with Van As and the impact of consumer-level 3-D printing and open-source design.
“With 3-D printing, we can very quickly and very cost effectively test out an idea in the real world,” he said. “With open source, we have a wide range of collaboration, background and experience levels.
“More than anything, being involved in this process has led me to imagine. … If two people on opposite sides of the planet from their garages can use this technology as a vehicle to create and share an idea which then blossoms into a small community working to find ways to create a large positive impact, imagine the possibilities as more and more people become involved and begin exploring what this technology can do.”
The Wickers always said it was the little things they looked forward to the most.
“I know it’s silly, but I’ve never seen her be able to hold a bag of chips with one hand and reach in and eat one with the other,” Jeromy said. “I’d love to see her hold a banana in one hand and be able to peel it with the other.”
“Or take a drink when she’s eating,” Sharon said. “To hold a fork in one hand and grab a water bottle with the other.”
Kylie wore her Robohand to school every day for the remainder of the school year. She liked that she could use the rubbery fingertips to hold papers still as she wrote on them. She liked the attention, too.
“It was very exciting at first,” Sharon said. “Everybody wanted to see it and touch it. Some kids said they wish they could have one, too. That made her feel good. … Her teacher messaged me and told me that Kylie’s spirit had really lifted, that she seemed more open and verbal and happy at school. That was great to hear.”
A couple of weeks ago, Kylie got her second prosthetic hand from Boylan. It’s a newer design, the Cyborg Beast.
It’s sturdier, Sharon said, and Kylie’s been able to do more with it. She likes wearing it when the family goes on walks. She rides along on her scooter.
Kylie’s especially excited for the start of a new school year.
“It’s always hard at the beginning of the school year. It can be nerve-racking. She would kind of dread it. There were always new kids and kids staring,” Sharon said. “But she can’t wait this year. She can’t wait for the first day.”