Monday, December 30, 2013
NORTHAMPTON — Five-year-old Ryan Wade got a slew of great toys for Christmas — a transformer robot, a two-headed dragon, a gigantic stuffed elephant that takes up a third of his bed. But the mechanical arm that a group of University of Massachusetts students made for him is the best of the lot.
It allows him to feed himself.
“I like it and I love it, “ he said the other day after he polished off a plate of grapes, pretzels and orange slices at his home on Union Street, using the device strapped onto his right forearm. “It’s awesome for me. Really, really awesome.”
Ryan, a kindergartner at Bridge Street School, was born with a condition called multiple synostoses syndrome, a genetic abnormality that caused bones in his fingers, elbows, feet and ears to fuse, affecting the movement of his joints. The condition affects his gait and other functions, but the most serious problem for him is that he can’t bend his arms at his elbows, meaning he can’t bring his hands to his face. So, until now, he couldn’t feed himself without using an 18-inch-long extension for his fork or spoon, couldn’t wipe his mouth, blow his nose or brush his teeth.
The plastic arm that the UMass students made for him attaches to three bendable finger-like extensions that he can use to clutch an object and then, using a lever on the side of the arm, hoist it up to his mouth.
“Before UMass was involved we didn‘t have many options,” his mother, Kara Wade, said as she coaxed him to give a demonstration for visitors the day after Christmas.
“Surgery is not an option for Ryan. Science has not gotten to the point where they could do an actual biological joint for him because the elbow joint is so complex.” Plus, she pointed out, he is growing, which complicates the matter even more. That growing was also making it difficult for Ryan to continue using the extensions he has for holding eating utensils, because his arms are getting longer and his hands are growing farther from his face.
‘I did it!’
Taking a break from watching a Scooby-Doo cartoon, Ryan, a bubbly little boy with blond hair and wire-rimmed glasses, waited patiently while his mother strapped a soft brace onto his arm. The brace holds a black plastic device about the size of a long TV remote controller. Attached to that is a removable tripod with flexible appendages, which his mother wrapped around a fork. Ryan placed a grape on the fork’s prongs. With his other hand, he clicked a button and slid a lever forward causing the arm to rise up toward his face.
On the first try, he didn’t have the positioning quite right and the grape hit his glasses instead of his open mouth.
“Remember, you have to tip it the right way,” his mother guided, “and you have to get it started with the first click, gentle.” Two or three tries later, with no sign of frustration, Ryan popped the fruit into his mouth.
“I did it! I get to feed myself and do all of the work and this thing gets to relax,” he said grinning.
“This is a work in progress for him,” Wade said. “He’s only had it a few days.”
A project evolves
The UMass students came into the Wades’ lives through a series of connections beginning with Ryan’s involvement with the Parent-Child Development Center of Community Action of Franklin, Hampshire and North Quabbin Regions, where one staffer had ties with Cirtec Medical Systems in East Longmeadow, which manufactures medical devices. During the summer Cirtec suggested to Frank Sup, a professor in the UMass mechanical and industrial engineering department, that he might want to consider working with the Wades. It just so happened that around the same time Sup, along with two other professors, Sundar Krishnamurty, also of the engineering department, and Cynthia Jacelon of the College of Nursing, received a five-year, $125,000 grant to work on projects to assist the disabled.
The plan for Ryan did not start out to be an orthotic arm with a hand gripper, Sup said. “It began with the students meeting the child and understanding the challenges that he faces in everyday life,” he said. Over time, the project evolved into the device Ryan has now.
“It’s really pretty amazing,” said Wade, a registered nurse at Holyoke Hospital. “There really were no other rehab-type options for him.” She said Children’s Hospital in Boston, which has been involved in treating Ryan, has taken an interest in the UMass device.
The students who did the work were four engineering majors and one nursing student. For the engineers— Brian Cormier, Andrew Friedlieb, Catherine Paquin and Kyle Morrell — it was the focus of their final course as undergraduates this fall, Senior Capstone Design, taught by Sup. For Emily Gardner of the School of Nursing, it is the subject of her honors thesis. Morrell, the team leader, said while the others are now finished with their UMass studies, Gardner, who will be finishing her paper this spring, will continue to work with the Wades for the rest of the school year as needed.
“She’ll be following up with family, checking up on how the device works for Ryan and taking care of everything that comes up,” he said. The students, who delivered the completed “assistive arm orthosis” the week before Christmas, gave the Wades a manual in a big black loose-leaf binder that will help them troubleshoot if problems develop. But, Morrell, who lives in South Hadley, said all of the students gave the family their contact information and intend to lend a hand if needed. “Any one of us is more than willing to go over and help them with anything that goes wrong.”
The students chose the project from a list of possibilities at the start of their class in September knowing only that Ryan had multiple synostoses syndrome, could not bend his arms at the elbows and his parents were seeking a device to help him with daily personal tasks.
They held frequent meetings with Kara Wade and Ryan throughout the semester. “We went through a number of prototypes to test with Ryan and see what was going to work and what wasn’t,” Morrell said.
The team designed the device using a 3-D computer model, which was then sent to a 3-D printer — about the size of an old television set — which laid plastic layer upon plastic layer to build the product. The 3-D printer that UMass has on campus made the first version in about a day, said Morrell. For the final device, made of sturdier plastic than the UMass printer can make, the students sent their design off to an outside printer.
The day Ryan tested the final version, Morrell said, was one he won’t forget. The boy had been practicing grabbing his toys and other objects with the tripod alone, and then attached to the mechanical arm. The time had come to see if he could actually feed himself with it. The team gathered in a small conference room in the engineering department and Ryan was offered some Cheezits. When he got a cracker into his mouth using the arm and gripper, “We just went crazy,” said Morrell. “It was a Tuesday morning and the lab was full and when we all started cheering people were coming to look in the door to see what was happening.”
Ryan’s comment moved them all. “He said, ‘It’s really good for you guys, but it’s really great for me,’ ” said Morrell.
Sup was ecstatic. “This is one of the reasons you teach a course like this,” he said in a telephone interview, “not only to have students identify how to use engineering skills but to really see how they can have an impact on an individual in the community.”
Beside being buoyed by Ryan’s remark, the students were excited to see him immediately start to adapt the tool for himself, Morrell said.
“In an hour he was doing more with this device than we thought,” said Morrell. “We had a very narrow scope. We said we want him to be able to hold a cup. We want him to be able to hold a napkin and wipe his mouth. But he looks at it and he thinks of all the other things he can’t do and how he can use this to help himself.”
One of those things is brushing his teeth, which until now, Mom has had to do for him. Ryan hasn’t quite mastered it yet, but Wade is confident he will in time.
“Ryan is very adaptive, very intelligent. Even at age 5 he knows how his body works,” Wade said. “This is just something that gives him an extra added resource. He likes to do things himself.”
Ryan, who has some restriction in his finger joints, can write his name and uses an iPad at school. He likes to draw, build with Legos and swim.
Wade said he will eventually use his orthotic arm at school but not yet. “We want him to be proficient at it first,” she said. A lot of effort went into making it, she noted. “I’m very protective of it,” she said.
Ryan has an 8-year-old brother, Cameron Wade. His father, Robert Wade, works for ServiceNet in the outpatient mental health unit. Wade said she and her husband thought hard before deciding to make Ryan’s story public.
“If there is a family out there struggling with not knowing there are resources like this, we want to help,” she said. “And,” she added, “it sort of normalizes things. Everybody’s different and that’s OK. Ever since Ryan was an infant that’s how we approached his condition.”
The UMass team considered seeking a patent for the arm but have not yet decided to do so, Morrell said. While it was designed especially for Ryan, he said, those with other conditions such as severe arthritis or injury could benefit from it.
But right now, team members are reveling in the effect it is having on a kindergartner who wants to fend for himself.
“We have potentially changed the way he does things,” said Morrell. “That’s what really matters for us. That’s why we chose this project. It was something that actually would make a difference.”