Susie & Steve DePascale, Eye Technology
With the funds donated to The Gleason Initiative Foundation, we were able to provide Steve DePascale an eye technology kit.
Dear Team Gleason,
We wanted to write you to thank you from the bottom of our hearts for your generously in sending me the WinSlate 13 Eye Gaze Device.
After being diagnosed in August 2011, my progression has pretty much been the same as Steve’s. Starting with arms, than legs, then breathing. Within the first 2 years, I went from being a successful business owner to being totally paralyzed,confined to a wheelchair, depending on ventilator around my nose 24/7.
To say that the device came in the nick of time is an understatement! My speech has deteriorated so much, that my wife, kids, friends & caregivers can barely understand me. Not only that, I’m going to have to get a feeding tube placed because I can no longer swallow solid foods. This is normally a pretty routine procedure, but when I went to get it done 2 years ago, they could not do it because of a prior stomach surgery. Now it has to be a full blown surgical procedure. My doctor is preparing me to the fact that I’ll probably come out of the surgery having to have a Tracheotomy also because my breathing is so bad.
While this wasn’t the end of the world for me, what was the worst was the fact that communication between my loved ones, caregivers & my wife, Susie, would be limited at best. I wasn’t sure I could’ve handled that.
Then low and behold Team Gleason came into our lives! With you’re generous donation of this device, I no longer fear the fact I’ll probably never speak again. In a few months I have mastered the device to the point that I don’t miss my desktop computer one bit! The fact that the unit is unlocked is a game changer. I not only use it for speaking, but also for texting, controlling all my TVs, controlling my Sunos music system, surfing the web & emails. I wrote this email with the device. After having to fight with Medicare/Medicaid for everything I need, The thought of having to deal with them again to get a far less functional device was disheartening.
My entire family thanks you Steve & you’re entire organization. You are truly an inspiration for all you do for ALS patents. You’re grit & determination to raise awareness for this wretched disease is unbelievable. It makes me feel all is not lost.
God Bless you ,you’re family & Team Gleason.
#No White Flags