Two brothers with advanced muscular dystrophy in Melbourne are using 3D printing tools to 're-enable' themselves – and they are now starting a public makers' space to share their tricks with other people with disabilities.The identical twins, Chris and Nick Fryer, were diagnosed with the crippling Duchenne strain of muscular dystrophy at the age of eight, and were told not to expect to live beyond 21.
Now 37 years old, they are the oldest people with Duchenne MD in Australia, and they are continuing to find new ways to extend and enrich their lives, using home-made technological aids.
Despite being reliant on ventilators around the clock, with movement restricted to their mouths and fingertips, the brothers have made their own robots, drones, wheelchair support frames and computer aids.
"We've always been interested in technology, even when we were very young," Nick said.
"When I was little, my dad taught me how to make model aircraft out of balsawood and glue, and my disability took that away from me, but now technology has given that ability back.
"I can design things on the computer and print them out on my 3D printer and it's fantastic."
Small 3D printed finger devices fixed to the twins' desk enable proper computer and mouse control, while delicate fixtures on their wheelchairs aid muscle support.
"I wanted to adjust how I was sitting in my wheelchair so I designed the little piece to go in the side support bolts.
"We measured it up, designed something, 3D printed it and screwed it in and it's great."
Meanwhile, a robot on the floor – 'Bonsai Bot', named after their love of bonsai - is still a work in progress.
"He's like a pet you can turn off," Nick said.
"The black parts you can see are all designed and 3D printed by us, and we decided to put an ultrasonic sensor on it so I've made him look nice and cute."
After visiting a 'makers group' in Hawthorn recently, Chris and Nick decided they wanted to begin their own space for sharing technology and designs.
They began MESH – Melbourne Eastern Suburbs Hackers – an incorporated group for anyone interested in creating their own technology, with a focus on enabling people with disabilities.
"I think a lot (of people with disabilities) don't even know this exists, and they don't know what they can do," Nick said.
"What we want to do is to enable people with disabilities to design and create things for themselves.
"In the past it was virtually impossible for someone like me to actually make something physical, but now with computers, computer-aided design and 3D printers it's become relatively easy."
Nick says the mantra they live by is "it's not people that are broken, it's technology that's broken".
"Eventually technology will eliminate disabilities, you can already see advances in exoskeletons and prosthetics and all sorts of areas where technology is helping disabled people to, in some cases, eliminate a disability entirely."
"That's what I want to promote. With robotics and all the technology being developed, you can re-enable yourself."
The group is currently operating out of a rented space in Ringwood, but the twins are looking for a more suitable permanent home.
Access to technology has been central to the twins' survival for most of their adult life.
When they were 21, the disease had taken hold of most of their major muscles, and their lungs were struggling to support their breathing.
Chris was on the brink of asphyxiation, and ventilator technology was not readily available to people with MD.
It was only because their mother, Jenny, had seen how effectively ventilators were being used for MD sufferers in Holland, that they were able to access the technology.
But it took a crisis to get there.
Chris reached a psychotic state from not having slept properly for three months when he was 21.
His brain was waking him up automatically to prevent asphyxiation in his sleep.
Furious and desperate, Jenny took her sons into the Austin Hospital emergency department and waited eight hours to see a specialist, demanding that her son be given a ventilator.
"Ventilators weren't new technology, they could have been using them on us for a very long time," Nick recalls.
"There are a lot of MD sufferers who died unnecessarily," he said, adding that his best friend, Ben, was one of them.
Their doctor, Michelle Caldecott, helped to tailor the machine – which is much like a sleep apnoea mask – to Chris and Nick's condition.
Ventilators are now commonly used among people with muscular dystrophy in Australia, and the average life expectancy of someone has increased by ten years, now sitting at 30 years old.
Having already exceeded that age, Nick and Chris are determined to increase the average life expectancy further.
"People still think of MD as being a deadly disease that kills you when you're young. I think it's no longer true," Nick said.
"In the future the average age will go up even further than it has."
