I briefly mentioned my nephew last week. He’s three and a half and has a severe case of cerebral palsy. He is unable to walk, talk, eat, or do so many things that we all take for granted every day.
A few months ago he got to try out an eye gaze computer, similar to what Steven Hawking uses to speak and write, but designed for a young child. I can only imagine how excited my sister must have been to finally be able to hear her son talk for the first time. They’re trying to get him a trial unit which he should have in a few months. The timing works out perfectly for my trip out to where they live for the family rafting trip. I really can’t wait to be able to be able to hear what the little guy has to say, and since he’s now been able to actually say that he loves to be read to have a few books that I’ll take with me to read to him, books that I read countless times as a young child.
He survives thanks to medical science and some basic technology. He can barely swallow and due to poor motor control (even subconscious motor control) he would be at great risk of choking if he tried. Like Roger Ebert, he survives thanks to a feeding tube. He likes to join the family at the dinner table and even though he can’t eat, he still likes to at least play with food. He even recently picked up some food and put it up to his mouth. He’s recently developed an interest in tasting food, such as a candy bar my mom was eating recently, he just can’t eat it. It would be understandable if he becomes bitter over being denied some of the basic joys that “normal” people get to have, such as eating, but I hope that Zach can have the same positive attitude about this life giving technology that Ebert has.
Zach’s legs are the part of his body he has the greatest amount of control over, but due to his poor core body strength and control he’s unable to walk. He’s been able to try a wheel chair that’s controlled by a joy stick, but he had some difficulty controlling that. More recently he tried one that’s controlled by head movement, which he did better with. Once he got the hang of it he was headed down the hallway finally free to explore the world around him.
Last week I shared the TED video about Berkeley Bionics’ Human Exoskeletons. One reason that video got to me is that I hope this technology can be adapted for my nephew and people like him. I contacted Berkeley Bionics, shared with them a little about him and my sister’s offer for them to use him as a test subject. I got this reply:
We are delighted to have received your inquiry and feel honored by your interest and offer to assist in bringing this life changing technology to the world. Currently, we have a team of mechanical, technical and software engineers on staff that are working around the clock to perfect this technology. I will forward your request to our engineering department but for now we must keep focused on our goal. Here is some information about eLegs for future use.
We believe that, eventually, any person who has some form of paralysis or weakness will benefit from using eLEGS. The key is having arm function and strong upper body strength. For now, if you can self-transfer from a wheelchair to a chair, are between 5’2″ – 6’4″ tall and weigh 220 lbs or less, you are most likely an excellent candidate to use eLEGS. Importantly, eLEGS doesn’t suspend your body weight; it applies it to your legs and feet. eLEGS’ own weight is supported by the machine itself. Ultimately, it will be up to your Doctor or Rehabilitation specialist to determine if you have sufficient range of motion in your legs and whether eLegs will be suitable for your particular needs.
My nephew’s situation doesn’t match there current technology, in fact their exact opposites, so I replied with a few more details. I then got another reply:
With robotics and technology anything is possible. We are working on future developments for other disabilities also. We will keep you updated via newsletter and check our web site out from time to time for up to date news on our company.
It’ll be a while before they could develop something that would help Zach, but that would make a huge difference in giving his life a greater degree of normalcy. The great thing about technology is that each program will build upon the last.
Thanks to science and technology Zach will soon be able to talk and have a much greater deal of mobility. It would be incredible if some day he could walk! Technology can and will change my nephew’s life.