A voice for Bill Ewing in his wheelchair!

Our dad, Bill Ewing, was diagnosed with ALS in late 2016.  By September of 2017 he was on a ventilator and by December of 2017 he could only move his eyes.  We were delighted when his ability to show different facial expressions returned after a few months at home and he is now able to smile and react, a gift we will not soon take for granted.

While he's lost all mobility, he is still fully cognitively intact and has his faith in God, humor, insight, spirit and an intense will to live and enjoy his wife, kids, and grandkids. 

This brings us to the fundraiser:

The tl/dr is Bill needs a computer, hardware, and software, to enable him to speak while riding in his new wheelchair -- we are a month out from receipt of said wheelchair and would love for him to be able to use it ASAP.  The out of pocket cost for this "extra" feature is roughly $5000 (exact number pending taxes, fitting, etc.)

In spite of getting “the bankruptcy disease” as ALS is known to many, our parents have been fortunate to be able to make ends meet with the wisely purchased Long Term Care insurance and our mother’s income from the business she started nearly 25 years ago; a business that is centered on patient advocacy.  That skill has been paramount in assuring our dad gets what he needs to survive and thrive within his circumstances.  Even with the identical resources, many would not be able to make happen what our mom has been able to make happen; because as pretty much anyone knows, the American healthcare system is not designed to help, it's designed to deny... and without the experience of arguing with these companies for DECADES, he probably wouldn't be alive today.  She has exhausted every resource she has personally and knows about professionally.

Our family has been very reluctant to talk about this in general and especially the financial aspect of it, knowing so many are much less fortunate.  People have asked over and over if there is any way they can help...  The answer is usually something like, "Bill will never turn down a prayer or a joke... or a movie or series recommendation" -- but what he needs now is something finite, and perhaps you can help.



A little history on the wheelchair saga:

He was fitted with a wheelchair in 2017 which he enjoyed for a few months, adding his amazing computer which spoke for him as he lost his voice.  After the 6 week stay in the hospital and the ventilator, he lost the ability to use the mouse, and began using the eye-gaze settings on the speaking computer.  It was a slow going process but he is now able to communicate his needs and feelings using this pretty amazing tech.  He has to indicate the smallest things from an itch on his nose to larger medical or emotional concerns. He has been largely bed bound since returning from the hospital in 2017, save for a couple of emergencies, due to discomfort in the wheelchair that was originally fit back then.

He has lost flexibility in his legs and his body mass and weight distribution have changed greatly with the progression of the disease and being bed bound. He has been very lucky to be able to get insurance to cover an eye-drive wheelchair which will be fitted for his body’s current state and have a computer fitted with software that can allow him to drive the chair with his eyes. What it does not seem to cover is the computer that enables his speaking while in the chair; the included computer cannot run both the driving and the speaking software.

He has his usual computer for speaking which could be dismantled and attached to the wheelchair; aside from a cumbersome endeavor which our mother is not capable of doing because of her own ailments,  it is gut wrenching every time we move that because if something happens to it, he will have no way of communicating at all.   So in addition to being a convenience, in a sense, it's also a huge peace of mind to have a backup device should his current computer stop working for any amount of time.  Anytime we need to do any kind of technical support, it is excruciating and scary.  The blue screen of death has a whole new sense of dread.

So, all of that said, it appears being able to move from his bed AND speak is an “extra” to the tune of $5000 — and it is very hard to make that happen with all the other running out of pocket expenses.  Can you chip in a little to help make this happen for our dad?  He's pretty cool.



Thanks for your time and consideration and every little bit helps!