A True Example of Determination
This story is in loving memory of Jeff, who passed away on June 5 , 2023.
“I was diagnosed at 6 months old with Spinal Muscular Atrophy. That was in 1959. It wasn't until two weeks ago that I found out I have what my doctor called Selenon-associated congenital myopathy, which is the same disease as Finn. My neurologist had never seen it before so he had to search for information on the disease.
My wife, Jess and I live in Lebanon, Ohio, which is just outside of Cincinnati. I was born in Milwaukee. In 1969, we moved to Gadsden, Alabama then to Cincinnati in 1972.
I work for GE Aerospace on software to control jet engines. I've been there 43 years. I went to college at Rose-Hulman Institute of Technology.
Obviously, I've dealt with this disease a long time. When I was growing up, I did most things kids do. I was just weaker than other kids. I rode a bike and learned to swim. My parents were not protective of me, for which I'm very grateful.
I wore a leather helmet when I was a toddler but after that, nothing special. I would fall sometimes but by letting me be me, they allowed me to get the most out of my muscles and to be confident in myself.
As long as I was growing, I was stable. During college, I started very slowly losing strength. I walked until I was 28, then got a scooter. I drove a normal car until I was 31, then got an outfitted van. I worked in the office until I was 36. Over Christmas break in 1994, I developed a plan to work from home and became GE Aerospace's first remote worker. GE ran the plant network to my house. There was no Internet as we know it today.
I'm sure you've read that scoliosis and respiratory issues are common. I had a spinal fusion from scoliosis when I was 16. I had congestive heart failure when I was 17 and 18 because the cast then the brace restricted my breathing. I've used a ventilator since I was 18. First, it was just for breathing treatments, then I slept on it, ten in 2003, I got pneumonia that led to pneumothorax and I became ventilator dependent and bed-bound. I've been that way for almost 20 years.
It sounds like I had a lot to deal with, and it was, but my parents raised me to be confident in myself and my ability to deal with life. I was fortunate to be fairly smart and I got a good education. I read voraciously and still do. I'm a very calm person so people like me and want to help. My GE family has been the reason I'm able to keep working.
The one thing I do know about the disease is I won't die from it. The secondary effects are the problem. I will be 65 in July (2023) and I am an example of what can be done with determination”.
-Jeff Gilton