Bodo and Lorelei
2018 Conference Patient Story

Dad and daughter build robotic arm and share lesson of a lifetime

It all happened so fast. Five-year-old Lorelei appeared to have a run-of-the-mill flu, but within a couple of hours she was hospitalized, unable to talk and struggling to breathe. The majority of her body was paralyzed.

“Everything changed in an instant,” recalls Lorelei’s father Bodo Hoenen. “It was extraordinarily difficult to process what was happening.”

Doctors told Bodo and his wife, Heather, that Lorelei had acute flaccis myelitis (AFM) – a rare condition that affects the nervous system. The Hoenens instantly pulled up Google, searching for any information they could find. They read about kids with AFM who were still on respirators a year after the illness struck.

“In those first few hours, we were prepared that she would not get better. But, the swelling in her spine and brain went down and some of her movement started to return. Unfortunately, her left arm remained completely paralyzed,” says Bodo.

Quickly, the plan was set: Lorelei and Bodo would build a robotic arm together. Bodo, who founded the company Dev4X, is no stranger to solving big problems, but had exactly zero experience in this area. They sketched prototypes and recorded videos asking experts for help in different areas. Using open social innovation they solved problems such as how to control the robotic arm using machine learning and pattern recognition to pick up the slightest muscle signals.

The robotic assistive arm came to fruition, but according to Bodo, it’s not the arm that’s the star of the show.

“The most exciting thing about going through this process is that Lorelei now sees problems as opportunities to solve,” said Bobo. “She says, ‘we should build this’ all the time. One of her dreams is to fly. So we’re starting small and building a prototype to help Barbie fly.”

Bodo and Lorelei will both take the stage in Austin on May 17 to share how Lorelei is doing today, how they are helping others dealing with paralysis and why simply putting yourself out there is one of the most important things you can do when facing a medical crisis. Perhaps flying Barbie will make an appearance, too!