Lorelei’s story: how a 5-year-old crowd-sourced a robotic prosthetic

Acute flaccid myelitis (AFM) is a uncommon situation that impacts the nervous system and has about a 2% restoration fee. The starkness of a medical statistic like that is brutal, and much more so when it pertains to the well being of your individual kids, however this was what Bodo Hoenen and his household had been dealing with in the summertime of 2016 when their five-year-old daughter, Lorelei, was identified with AFM.

The situation notably impacts the spinal column and in Lorelei’s case it had paralysed her left shoulder and left arm. “The prognosis was that the one factor that will assist was occupational remedy and physiotherapy,” says Hoenen, “however trying on the outcomes, again then, there have been solely two children that had had any important restoration…”

Hope was wanted and it was sparked by a venture the household noticed within the hospital: “Researchers had been strapping on an exoskeleton swimsuit to paraplegic people and offering them the biofeedback with the swimsuit,” recollects Hoenen. “They additionally offered visible suggestions by including a VR headset displaying them the precise motion of the arms. With the headset, you’d see your self strolling after which really feel your physique strolling because the exoskeleton swimsuit was transferring your physique and this is able to pressure the mind to suppose ‘Okay, I’m going to stroll now’ and they might decide up these alerts from the mind and translate them into messages to regulate the exosuit and VR.”

After consulting specialists, Hoenen theorised that as a substitute of hooking sensors to the mind they wanted to hook sensors on to the biceps muscle in Lorelei’s arm: “We knew there have been a minimum of very weak alerts going to the muscle and we had been hoping to choose these up and hoping that forcing her to proceed sending alerts to her muscle tissues would assist that rehabilitation course of.”

Hoenen knew that most likely one of the simplest ways to do that was to construct some form of robotic prosthetic arm, however he had a drawback: he had no concept how to do it. That’s when he and Lorelei determined to ask the world. “We determined to leverage the collective intelligence of everybody round us,” says Hoenen.

So, after sifting by way of all the knowledge they may discover and speaking to different mother and father with kids that had AFM, Bodo and Lorelei set to work with a easy first design – they needed to 3D-print the braces and someway purchase an actuator motor to assist pull the arm up and down. But earlier than they acquired too far into the venture, they determined to report some movies to ask consultants for assist.

The response was “pleasantly stunning”, says Hoenen. Within a couple of weeks they’d had Actuonix donating actuators whereas, amongst many helpers, they’d acquired help from consultants in battery tech and electronics from South Africa and Germany respectively, and had a full scan of Lorelei’s arm achieved. It wasn’t lengthy earlier than a prototype was made, adopted by a 3D-printed sleeve in PLA.

Signal issues

However, the largest problem they confronted was selecting up the muscle sign from Lorelei’s arm. They found that it was very tough to filter and normalise the sign and set a threshold that triggered the actuator. Hoenen discovered there was little or no distinction within the sign between when her arm was at relaxation or energetic. As they tried to set a threshold, in addition they seen that the actuator might be triggered by a finger twitch and even Lorelei’s coronary heart, in order that they put out one other video asking for assist.

Hoenen pitched the concept that the uncooked sign might be run by way of machine studying or sample recognition software program to trace down a distinctive sign. Soon after posting their video, they got here throughout a agency referred to as Coapt that makes use of sample recognition software program to assist amputees use prosthetic limbs. The firm has a proprietary system that makes use of 17 sensors to trace the muscle alerts. The software program interprets the alerts it finds into corresponding actions on a digital arm. Coapt gave the household an analysis unit to allow Lorelei to practise and decide up the arm alerts, which meant Hoenen might lastly create a working mannequin.

While some producers had been extremely beneficiant, Hoenen says he encountered a stunning quantity of negativity from others: “Lots of them saved mentioning ‘is that this FDA permitted?’ […] From my perspective, I don’t care. This is about my daughter, I need this answer to work. This stuff that you simply’ve acquired prices $50,000. I simply can’t afford that and the expertise that you’ve isn’t all that intelligent, so why don’t we open-source this and expedite the innovation that occurs with what we’ve acquired and this may create a higher world for all of us together with your online business mannequin?” Unfortunately, many medical producers aren’t prepared to even contemplate experimenting with open fashions but. “Open innovation drives innovation exponentially [compared to] closed, however they failed to actually grasp that,” says Hoenen.

In January of this 12 months, Lorelei got here as much as her mother and father and stated, "Hey look what I can do," and was in a position to transfer her arm up and down unassisted. Since then she hasn’t wanted to make use of the prosthetic and whereas Hoenen says it’s not one thing he desires to take additional himself, he’s serving to different mother and father and making an attempt to sort out “a number of the core challenges nonetheless to beat.” These embody growing bridge software program between a system of 17 electrodes and the machine, the Raspberry Pi on this occasion, and getting the right construct for the arm sleeve that homes the electrodes.

Talking in regards to the expertise, Hoenen is cautious to downplay the expertise. He’s additionally pragmatic over whether or not the arm made that a lot of a distinction to Lorelei’s restoration: “At the second, we solely have a pattern measurement of 1,” he concedes. At Medicine X Stanford in September, Hoenen most well-liked to explain the expertise as a story of “tangible hope, the place we’d have been spectators with out this venture”. However, different mother and father who’ve kids identified with AFM are utilizing the venture to construct robotic prosthetics and difficult that 2% restoration fee.

Bodo and Lorelei's venture is documented and open-sourced on www.ourkidscandoanything.com with movies of the journey, guides for constructing the arm itself and extra particulars of the important thing remaining challenges.

(This function was first revealed in problem 184 of Linux User & Developer).

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