We’ve all heard the saying, “Life can change in the blink of an eye.” But for this family, their life really did.
Lorelei, an ordinary 5-year-old girl, seemed to have the flu. When her symptoms got better and she became well enough to go back to school, her parents didn’t think anything of it. No one knew that this wasn’t just a regular seasonal illness.
When Lorelei came home from school one day, she knew something didn’t feel right. Her father, Bodo Hoenen, remembers, “She started complaining that her left arm was numb, and hours later, she ended up in the ICU.” Her symptoms progressed very rapidly from the time her arm began to feel numb and by the time she got to the hospital, she was struggling to breathe.
After hours spent in the ICU, Lorelei was diagnosed with a rare condition that affects the nervous system — acute flaccid myelitis — which can result from a variety of causes, including viral infections.
Bodo and Heather Hoenen, Lorelei’s parents, looked up her condition on Google as soon as they got the news.
“I researched about it, and most of the kids who had it were in California. I saw that most of the kids were still on respirators a year later and thought that this was it,” Bodo Hoenen tells SheKnows. As time passed, most of Lorelei’s movement started to come back as the swelling in her spine and brain went down, but her left arm remained completely paralyzed.
Although this was devastating news, Lorelei and her father weren’t about to give up yet.
Hoenen found a person living with paralysis who, after a few months of using an exoskeleton, was able to regain some of their muscle movement. He then started to research exoskeletons in hopes it could possibly help Lorelei, but most of the ones he found cost thousands of dollars.
Lorelei and Hoenen then decided to build their own exoskeleton with the help of some YouTube videos and a few kind individuals. “Everything was a challenge. We had nowhere to start. We wanted to build an exoskeleton, but we didn’t know how,” Hoenen says. They reached out to experts to help with mapping images and other areas of the project.
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“The biggest challenge was trying to pick up muscle signals. Lorelei’s arm was 98 percent damaged, and the signal only picked up her heartbeat. When she was in the pool, we could see she could move her arm about 2 to 3 degrees, so we knew there was some amount of movement left,” says Hoenen.
After learning a lot about machines and pattern recognition, they were able to create a robotic arm that would pick up the slightest of signals. “The reason why we did this is because we always think of problems as opportunities to solve. We didn’t have an expectation that it would work, but we wanted to do something about her arm,” Hoenen explains.
Once the robotic arm was finished, it only took Lorelei about three months to be able to use her left arm again. She was so excited when she discovered she could move it again — she was showing off her new muscles to her parents as soon as she saw she could move them.
“We had the expectation to fail, but we were hopeful,” says Hoenen.
Throughout the entire project, Lorelei was actively thinking about how to solve the problem and her father says that was the best part of creating the arm.
Hoenen and Lorelei have been helping a lot of parents whose children are in similar situations. Many parents have reached out to them for help, and they decided to share their project with the world. They have assisted many people living with disabilities and paralysis and have taught us what can happen when you don’t give up.
As part of that effort, Hoenen and Lorelai will be featured speakers, telling their story at the second annual What’s the Fix? conference (#WTFix) in May. WTFix is a movement and an event that started in 2017 to help the health care industry learn from real patients. While most health care conferences focus on industry insiders talking to each other, What’s the Fix? highlights real people, like Hoenen and Lorelai, with real stories of overcoming health care challenges and driving change to the system. You can tune in to Hoenen and Lorelai’s speech for free on May 17, 2018.