If it takes courage to jump out of a plane, Robin Mower has courage like a fighter jet. She has always wanted to know what it would be like to fly, but the problem is she can't walk.In 2009, Robin was diagnosed with amyotrophic lateral sclerosis or A.L.S. She's paralyzed from the neck down and is confined to a wheel chair, but that doesn't stop her from living life to the fullest. "I won't let this define who I am," Robin said. "This disease may take control of me, make me a prisoner in my own body, but it will never take who I am."The average life expectancy of someone with A.L.S. is three to five years. Robin is in year five, and time is a luxury she doesn't have.
"You hear every day from people especially those diagnosed with terminal illness to live every day like it's your last," said Robin's husband John. "I hate to say it that way, but a lot of things we do is because we need to do them now or as quickly as we can. We can't wait for other things to catch up."
BLOG: Robin's Journey with ALS John Mower is a former high school teacher. He now serves as Robinâ??s full-time caretaker. His days are dedicated to her every need, which he admits - as her diseases progresses - can be a daunting task. "Even with the lightest days, there's something that'll put a little fork in you and twist it," John said.
John said disease has forced them to re-define their marriage, making them better people in a lot of ways. "I miss the physical contact. That's huge," he said. "I can hug her, but she can't hug me back, unless I move her arms. Even that doesn't work so well."
The Mowers have dedicated their lives to raising A.L.S awareness. The couple travels the country speaking to anyone who will listen, including medical schools, high school students, and lobbyists on Capitol Hill.
Of course, Robin doesn't stop there. Each morning, she spends hours on the computer. Since she can't move her hands, a special device tracks the movement of her eyes, allowing her to converse with hundreds in the blink of an eye. â??It took this disease for me to figure out my purpose in life...helping people."
The overwhelming likelihood is that there won't be a cure in Robin's lifetime, but if you think that would ever slow her down, youâ??ve never met Robin Mower.