They’re called magic, but they help disabled children do the most ordinary tasks by themselves.
“Magic Arms” allows 5-year-old Emma Lavelle to take a sip of water, practice writing her letters and give her mom a hug. Without them, Emma — who was born with a rare neuromuscular condition — doesn’t have the strength to lift her arms on her own.
Engineers at a Delaware hospital invented the device, which amplifies arm strength. Hospital staff custom-make and fit them one at a time — using a 3-D printer from Stratasys of Eden Prairie — and cannot keep up with demand.
That hospital now is negotiating with a Blaine industrial design firm to create a nonprofit that could help increase production and distribution of the devices to children around the world.
Tom KraMer, owner of Kablooe Design, has worked as an industrial designer for more than two decades. His 13-person firm has designed everything from medical devices to milkshake machines. His goal is to further improve the Magic Arms design — officially known as the Wilmington Robotic Exoskeleton, or WREX — and make a “fit kit” so parents can equip their children with the device without traveling to a hospital. He wants to provide them to disabled children at little or no cost.
“When I saw [a] video of Emma, I thought someone has to get this to more kids, and a little voice inside me said, ‘Why not me?’” said KraMer, a father of five.
“We are all working together to get this to as many kids as we can,” said Tariq Rahman, director of orthopedic research at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del.
Rahman, who was one of the WREX inventors, and his team came to Blaine in April to discuss details.
“There are a lot more kids and adults who can benefit from this,” Rahman said. “We are the only people who make this now. We have a lot of demand. Any help we can get is great.”
Emma, who lives in Delaware, was born with a condition called arthrogryposis multiplex congenita, characterized by extreme joint stiffness and weak muscles. It is rare — an estimated 440,000 people have it worldwide — and what caused her condition is unknown. When she was born, her legs were curled up at her ears and all she could move was her thumb, said her mother, Megan Lavelle.
After intense therapy and multiple surgeries to align her legs and fix her hips, Emma took her first steps with a walker at age 2 ½.
Low muscle tone still made it impossible for her to lift her arms. “She can swing her arms, but she cannot lift them,” her mother said.
Emma has normal intelligence, and her parents wanted her to learn and experience the world. They saw an older child using a WREX at a conference and pushed to get Emma fitted with one.
After several months and visits to the hospital, she got her first set of “Magic Arms” around age 1. They were heavy — made of metal — and mounted on a stand.
Initially, she loved to use them, but she lost interest as she became more mobile and didn’t want to be tethered to one spot.
Emma’s mother pushed and engineers at the hospital developed a new version out of lightweight plastic and mounted on a jacket so she can move around.
The device involves simple mechanics. There’s no motor or battery. It has plastic components — made with the 3-D printing machine from Eden Prairie-based Stratasys — and elastic bands. The WREX helps counteract gravity so users can lift their arms.
“Its looks like someone’s erector set that some kid developed as their eighth-grade science project. It’s incredible the device works so well,” Megan Lavelle said.
“It’s really low tech. It’s a beautiful design,” KraMer said. The 3-D printing technology creates the potential to produce these devices quickly and inexpensively.
The WREX allows Emma to experience a number of things she couldn’t before, her mother said. She can work at an easel or chalkboard, cut with scissors, paste and write. She is now working on being able to brush her teeth and feed herself.
“She is so proud of herself. She is so independent. She says, ‘I can do it,’” Megan Lavelle said.
The independence lets her personality shine through.
“She is happy, cheerful and smart,” her mother said. “She is very girlie. She has a lot of interest in fashion and makeup and baking.”
Video went viral
Last summer, Eric Jenson, owner of Blaine-based Jenson Productions, made a video about Emma for Stratasys (http://www.startribune.com/a2226). Demand for the device spiked after the video went viral on YouTube.
“We have people from all over the country who want to come and get fitted for these,” Rahman said. “We’ve had 150 requests in the last three or four months.”
It takes one to two weeks to custom-make each device, and the hospital can only help patients with the means to travel to Delaware to be fitted.
Jenson, who had worked with KraMer before, showed it to the industrial designer. Now, they’re moving ahead with plans to establish the nonprofit Magic Arms For the World.
KraMer said he’s moved by the intellectual challenge and the emotion that surrounds helping children.
He said the goal is to make the WREX device even lighter and less bulky. Ideally, parents would submit their children’s measurements. The WREX would be shipped to them, and they or caregivers could make minor adjustments to create the right fit.
KraMer and Jenson said they are making this a nonprofit because while hundreds of thousands of disabled children could benefit from it, it’s still considered a niche product in the medical device industry.
“It’s rare enough. There is not enough profit to be found for a big company to come up with a solution. They are looking for mass markets,” Jenson said.
KraMer is talking with local universities to get engineering and business students involved with the project.
They’ll need to raise $860,000 to get the charity up and running.
After seeing her daughter’s progress, Megan Lavelle said she’s hopeful that others will gain access to the device.
“We are all for it,” she said. “Seeing the other children using the WREX is the one of the most rewarding things for us. You just want every child to experience that.”