Orlando Sentinel | August 28, 2012 | By Scott Maxwell
TAMPA — Karen Clay is using alcohol swabs to clean and sanitize her son’s ventilator.
Michael Clay is 31 years old — and all of 73 pounds. He lays immobile on his back in his bed, staring at the computer monitor mounted above his bed.
Spinal muscular atrophy has robbed his body of the ability to move much of anything other than his eyes and forehead. Yet he is able to speak using technology similar to that used by Stephen Hawking.
Sensor pads on his forehead detect nerve pulses, allowing him to control a computer.
“Would you mind stepping into the kitchen?” his computer voice asks me.
Karen needs to finish dressing and prepping Michael for their protest.
The family lives in South Tampa, a few miles from the Tampa Bay Times Forum, where all the glitz and glamour of the convention are on display.
The Clays’ life is anything but glitzy. Yet they are happy. They simply don’t want to be ignored.
“I tell people I’m an M-O-M,” Karen explained, “a mother on a mission.”
Karen, Michael and her other son, 29-year-old Brian, are protesting this week to remind the candidates and delegates of the needs of the disabled — and to put a real face on the impact on the potential cuts and changes to Medicaid that Mitt Romney and Paul Ryan have proposed.
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