The moment Megan Lavelle saw the device, she knew it would change her
daughter’s life. Lavelle is an energetic, unstoppable mom whose
youngest daughter, Emma, was born with arthrogryposis multiplex
congenita (AMC). At a Philadelphia conference for AMC families, Lavelle
learned about the Wilmington Robotic Exoskeleton (WREX), an assistive
device made of hinged metal bars and resistance bands. It enables kids
with underdeveloped arms to play, feed themselves and hug.
AMC is a non-progressive condition that causes stiff joints and very
underdeveloped muscles. Emma was born with her legs folded up by her
ears, her shoulders turned in. “She could only move her thumb,” says
Lavelle. Doctors immediately performed surgery and casted Emma’s legs.
The baby girl went home with parents determined to provide the best
care.
Medical experts warned that AMC would prevent Emma from ever
experiencing any sort of normalcy. She developed more slowly than an
average child and spent much of her first two years in casts or
undergoing surgery. Unable to see Emma play and interact with her
environment in ways her older daughter had, Lavelle privately wondered
whether Emma’s cognitive ability would be hampered as well.
Determined to Grow
But Emma progressed, slow and steady. As she grew and became able to
move about with the help of a walker, it became clear that her mind was
sharp and her determination on par with her mom’s. At two years old, she
still couldn’t lift her arms, and the smart little girl wanted more.
“She would get really frustrated when she couldn’t play with things like
blocks,” Lavelle says. And so the mom would be Emma’s arms for her;
playing with blocks, eating, brushing teeth.
Then came the WREX, demonstrated at the conference by an 8-year-old AMC
patient lifting his arms and moving them in all directions. Lavelle met
with the presenters, Tariq Rahman, Ph.D, head of pediatric engineering
and research, and Whitney Sample, research designer, both from
Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware.
Rahman and Sample had worked for years to make the device progressively
smaller, serving younger and younger patients. Attached to a wheelchair,
the WREX worked for kids as young as six. But Emma was two, small for her age, and free to walk.
In Sample’s tool-and-toy filled workshop, the team strapped Emma’s
little arms into a small but awkward trial WREX attached to a stationary
support. “She just started throwing her hands around and playing,”
Sample says. Megan brought Emma candy and toys and watched her lift her
arms toward her mouth for the first time.
Tiny Rewards
For Emma to wear the WREX outside the workshop, Rahman and Sample needed
to scale it down in size and weight. The parts would be too small and
detailed for the workshop’s CNC system to fabricate. But just perfect
for printing using FDM technology. So a 3D printed prototype WREX was
created in ABS plastic.
The difference in weight allowed Sample to attach the Emma-sized WREX to a little plastic vest.
The 3D-printed WREX turned out to be durable enough for everyday use.
Emma wears it at home, at preschool, and during occupational therapy.
And the design flexibility of 3D printing lets Sample continually
improve upon the assistive device, working out ideas in CAD and building
them the same day.
Fifteen kids now use custom 3D-printed WREX devices. For these littlest
patients, Rahman explains, the benefits may extend beyond the obvious.
Prolonged disuse of the arms can sometimes condition children to limited
development, affecting cognitive and emotional growth. Doctors and
therapists are watching Emma closely for the benefits of earlier arm
use.
Emma quickly grew to love the abilities WREX unlocked in her. “When she
started to express herself, we would go upstairs [to Sample’s workshop]
and we would say, ‘Emma, you know we’re going to put the WREX on.’ And
she called them her magic arms,” Lavelle says.
The little girl’s approval is a fitting reward for her determined mom
and dedicated researchers. Sample says: “To be a part of that little
special moment for someone else, can’t help but tug at your heart
strings.”
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