Living with limb differences: Nebraska woman enhances independence via custom device from Madonna’s Institute

Thanks to phrases like “doom-scrolling” and “internet trolls,” social media tends to get a bad rap. However, it can also be a force for good, connecting people and ideas. For Julia Elizabeth Sullivan, a 28-year-old born with congenital limb differences in both arms and legs, one Instagram post proved to be life-changing.

“I saw someone on Instagram who said he used suspenders to pull up pants because he didn’t have legs,” Julia said. “And I thought that was maybe a good idea.”?

The Aurora, Nebraska native and college graduate currently lives with a caretaker to help her with daily activities such as dressing and using the bathroom. She wanted to reach a new level of independence, so she contacted her longtime occupational therapist, Michelle Wiggins, OTD, OTR/L, ATP, at Madonna Rehabilitation Hospitals for advice.

“We tried the suspenders, but then we came up with other ideas,” Julia said. “We created a whole team of people who might be able to help.”

Wiggins quickly tapped Arash Gonabadi, MS, PhD, Madonna’s assistant research director of the Research Institute for Rehabilitation Science and Engineering, for his expertise. The Institute is Madonna’s on-site laboratory that draws patients, clinicians and researchers together to develop new treatments and technologies.

“Julia told me she wanted to learn how to put on her pants by herself, which was a big deal for her,” Gonabadi said. “Together with her parents, we came up with some basic ideas and talked about what could work. I took measurements of Julia and any equipment she used, like walkers or wheelchairs.”

After an online search for potential existing products came up empty, Gonabadi knew he needed to create a custom device.

“I started sketching some designs and went to both physical and online stores to find parts that could work with my design,” he said. “Using parts that are easy to find makes it easier to fix or replace parts later, which saves money and time for the patient.”

First, Gonabadi made several modifications to a pediatric-sized walker, which included attachments that could help hold a pair of pants or shorts in place. With the idea of giving Julia several options to try, he also made a similar device out of PCP pipes.

Julia appreciated Gonabadi’s thoughtfulness and attention to detail.

“He understands where certain things might be a challenge for me,” she said. “He knows what my capabilities are.”

During the next visit, Gonabadi explained how both devices worked to Julia and her parents. Then, after a bit of trial and error, she successfully put on a pair of orange gym shorts. Julia’s subsequent smile lit up the room.

“Today, it was really exciting that I could do it completely on my own,” she said. “It makes me feel hopeful because I haven’t been able to put pants on [by myself] for so many years, and that’s been a hindrance to my independence.”

Julia eventually chose the modified walker as her favorite, and Gonabadi promised to make a few more tweaks to the device so that Julia could pack it up and take it with her.

“I’m going to try to do jeans next time,” she joked. Then, in a moment of reflection, she noted that agreeing to share her story had a full circle quality to it.

“If my story can help others, it will be worth it,” she added.