NEW ORLEANS– Born without a femur in one leg and a short femur in the other, Elijah Jack is 19 months old and cannot walk on his own, like most toddlers his age. Another 19-month-old, Freya Baudoin, born prematurely at 28 weeks and delayed in mobility, has finally taken her first step.
These types of children with special needs often take longer than most to become independently mobile, which can be difficult for parents and others who care for them. Elijah is often carried because of his limb difference and club feet, which means that instead of being straight, his feet are turned inward and his toes point downward.
As a result, getting by on your own is a challenge.
That was until last spring. Elijah was one of the first recipients of a specially designed wheelchair built by a team of biomedical engineering students at Tulane University. Nowadays, Elia can move completely independently on wheels: turning, stopping and steering.
“He loves his seat,” said Crystal Jack, Elijah's mother. “So I get a lot of things done because I know he's safe in his seat. He knows how to take it around the house and stuff, so I get a lot of stuff done now.”
Before the chair, Jack said her son could slide across the floor to get where he needed to go, but the chair offers a whole new level of independence.
“Like I said, we've come a long way, but I'm blessed to have him,” Jack said, smiling as he paced back and forth in the living room of her mother's home in Ventress, Louisiana.
The Tulane students partnered with the nonprofit MakeGood in 2022 to design and produce the chairs to help toddlers (approximately ages 1-4) build independence and strength, and for some, prepare for a real wheelchair . Although it remains difficult to obtain precise figures on overall wheelchair use among children, in 2002 there were approximately 2.8 million wheelchair users in the US, of whom 121,000 were under the age of 15, according to the US Census.
MakeGood is the New Orleans regional coordinator for TOM Global, an Israeli nonprofit that combines modern design and digital manufacturing to meet the neglected needs of people with disabilities and disabilities. TOM stands for Tikkun Olam, which is Hebrew for 'repairing the world'.
The students worked with the nonprofits as part of a service-learning project – a graduation requirement at Tulane. But many say that when the project started they had no idea of the impact their chairs would have on the lives of children in the community.
Dylan Lucia, a graduate student at Tulane from the San Diego, California, area, said he chose the field of biomedical engineering to help people and this project reflected that.
“To see that direct kind of feedback from patients and see how much these (chairs) improved their lives and helped them become a more independent person, even as a little toddler… it was really endearing to see something like that and to see the positive to see change,” said Lucia.
The chairs are especially useful for families whose children will eventually need a wheelchair. Noam Platt, director of MakeGood, said insurance companies typically will not cover the cost of a wheelchair for a child unless there is sufficient evidence that the child can use it effectively.
“These devices are used to provide evidence that their quality of life will be improved so that they may be able to receive a more sustainable assistive technology,” Platt said.
Freya's chair was one of five made over several weekends early this fall at Tulane's Scot Ackerman MakerSpace, a massive workshop with laser cutters, 3D printers, and drilling and sewing equipment.
Students added padding and safety straps to the seats, and some required adjustments to meet the needs of the children receiving them. For example, Freya's chair needed a wider strap to secure her torso, and another patient needed a space behind the chair large enough for his ventilator. A bar had also been added to the back of Freya's chair so she could push it like a stroller. She took her first steps in early December after working with her physical therapist and her chair.
There's no word on how long Freya will have to use the chair, but her mother said it was more than a blessing.
“At first we didn't think the muscle tone in her ankles was strong enough for her to walk, but the neurologists recently told us that everything looks good and that she should soon be able to walk on her own or with limited assistance,” said her mother, Heather Hampton, from Metairie, Louisiana.
Hampton said Freya can push the chair on her own like a stroller. She wishes they could have gotten it sooner, but understands the adjustments that had to be made.
“We're just happy that she will eventually be able to walk and move around on her own,” Hampton said.
Platt said the original design and plans for the mobility chairs came from TOM Global, but the parts were purchased or made in the U.S. and then assembled by hand at Tulane. The wood panels used for the chair's frame were laser cut and then sanded by students to polish away any splinters and rough edges. Padded chairs were stuffed into fabric cushions sewn by students. Wheels were purchased online and then bolted into place.
Elia has held his chair since the end of March. It was made in the first batch of approximately ten chairs supplied to pediatric patients for use during occupational therapy and physiotherapy sessions.
“His chair shows him that 'I could be awake just like other children.' You know, he doesn't let (his) disability get in the way,” said Jack, who added that Elijah will likely need some form of mobility assistance for the rest of his life.
Bumpers were added to the bottom of the latest batch of chairs after first-round parents said their furniture (and feet) took a beating as their children were able to use their chairs better and faster.
Platt said there have been two rounds of chair building so far and 15 chairs have been given away. But he said they are aiming for at least 10 to 15 more by spring 2024.
“We are coordinating with our clinical partners to find children who are a good fit for these devices,” he said. “We work with the clinical team to ensure each chair fits the person and make adjustments as necessary.”
Platt said the chairs cost less than $200 each to produce, and even though these chairs were donated free of charge to patients, the price is still much lower than most children's wheelchairs on the market and power wheelchairs can be used in thousands walk.
The student-made chairs also look more like toys than hospital equipment, Platt said. They are made to be light and easy to maneuver.
Platt said he would eventually like to see the chairs made in high schools and colleges across the country.
“For the students I work with, I tell them this is just the beginning,” Platt said. “I'm trying to open their eyes to kind of a lifelong passion that they're going to have to solve these problems because once you see the problems, you see the magnitude of the problems and you can't really ignore them.”