Help Michael Giles get eye-controlled wheelchair
Donation protected
Imagine you develop a mysterious disease that gradually paralyzes every part of your body. Soon, you can't eat, speak, walk, move your arms or even your fingers to type. You're in a wheelchair 24/7, locked inside your withering body while your mind is still fully engaged.
Now imagine you learn of an incredible technology designed for people like you. It tracks your *eye movements* with a special camera, allowing you communicate via text-to-speech software AND fully control your wheelchair. Drive independently and adjust all seating positions for your comfort. You can even use it to turn the TV on/off, adjust the thermostat, or ask Siri to play music.
Now imagine you can't possibly afford the CDN $29,000 price tag. :(
That technology is real, and it's called ABILITY DRIVE. And it's why we are fundraising this month, to try to get that incredible system for my husband's wheelchair. A loving, nimble-minded, witty, and delightfully verbal person--a teacher, a poet, and a gifted potter-- Michael was diagnosed in May 2018 with ALS, later revised to the rarer, non-fatal PLS. As of December 2022, his motor-neuron disease (MND) has progressed to almost complete paralysis.
People whose lives have been touched by ALS say it's one of the cruellest diseases in the world. It's also one of the most expensive. Every stage of physical decline requires the family to acquire more and more expensive medical-support equipment. Sadly, those most in need of high-tech solutions like Ability Drive are often least able to afford them.
Before PLS, we ran a well-loved little shop and pottery studio in Cobble Hill, Two Hoots Gift Gallery. Our astonishingly supportive community helped us raise money for a used wheelchair van so I could still take Michael to his studio after his legs gave out (and in the years since, to vital doctor and hospital visits). Bless every friend and neighbour and stranger who donated to that cause, truly. XOXO
It was heartbreaking to have to close Two Hoots in 2020, but Michael needed my full-time care at home and total isolation from Covid. We live on our small pensions now, and everything goes to Michael's specialty clothing, tube feed, supplements, home care dental, physio, etc. We have IMMENSE gratitude for the BC ALS Society and CAYA groups, who loan their equipment to clients to ease the financial burden. In November we finally had to forgo the ALS Society's loaned powerchair to buy Michael a custom one that could meet his advanced physical needs. Thank god for our retirement health-insurance plans. Who would have imagined a wheelchair costing as much as a new Tesla? Yes. Really. $51,000.
Last May, we were quoted CDN $24,000 as the base price for Ability Drive, with additional costs of $3,300 for hardware to mount the system on Michael's wheelchair, and $1,700 for an independent power supply to run it outside the home. The price has since gone up several thousand, but the supplier says he'll honour the May price *IF* we purchase BEFORE THE END OF DECEMBER 2022.* We're able to get a $15,000 grant, but it too MUST BE USED BY YEAR-END. So we're on a real deadline with this fundraiser.
PLS has ravaged Michael's body and our savings. The physical and financial hardships are the sad part of our story. But there are happy and inspirational parts too.
The bright light in all this is Michael's shining spirit. He still makes me laugh every day. He is tapping profound spiritual depths through his meditations, prayer, and some amazing work with a local hypnotherapist (shout-out to the incredible Ron Foss). While many with ALS fall into dark despair, Michael finds joy, meaning, and hope in every day. A lifelong teacher, he inspires everyone he interacts with, from friends to caregivers to visiting OTs, physiotherapists, and more. All come away smiling, feeling lifted by his positive energy.
Michael is my favourite person on this planet, and I am so lucky to be his wife. PLS hasn't changed that. For better or for worse. Hopefully, better for Michael in 2023 with Ability Drive, if we can reach our goal with this fundraiser. No donation is too small, dear friends. Thank you for your love and kindness this holiday season.
With gratitude,
Anita Willis & Michael Giles
Cobble Hill, BC
PS If you are curious to know more about Ability Drive, check out this link: https://www.closingthegap.com/ability-drive-drive-your-wheelchair-with-your-eyes/
Dec. 13, 2022 UPDATE: Our community of friends, family, former colleagues and customers just BLEW US AWAY by getting us to our original $15,000 goal line in a mere *week,* well in time to meet our Dec. 31 deadline to get a matching grant and cover the full cost of Ability Drive for Michael!!! What's more, you beautiful people continued to donate, and suddenly we were well OVER our goal. I reached out to propose returning the extra funds, but the donors insisted that Michael must have other needs they could help with. So, deep breath, I've posted a photo of a possible disability bath tub that would greatly increase Michael's comfort. We're currently using a lift to lower his 10.5' frame into our home's short and shallow regular tub, and his increasing limb rigidity due to the PLS makes it pretty darned painful. So, yes, this is something that would help him, a lot. We don't expect anyone to donate more after the community's spree of generosity. But for those who feel they missed a chance to help Michael and really want to do something for him, well, bless you guys, money toward the cost of this tub and a bathroom reno would be extraordinary. Love and hugs, Anita & Michael
April 8, 2023 UPDATE: It took a crazy-long time for suppliers to provide all the hardware and software needed, but this week, Michael received the final install of his Ability Drive technology and can now operate his wheelchair using JUST HIS EYES! Watch the videos below on YouTube to see the JOY he experiences as he tries the new tech for the first time. :)
Co-organizers (2)
Anita Willis
Organizer
Cobble Hill, BC
Andrew Brown
Co-organizer