The care 20-year-old Jacob West requires is around-the clock and intensive. He has just one lung, and a broken airway. Thousands of dollars in treatment each year are paid for in part by private insurance, in part by medicaid.
"Everytime our elected officials....cut taxes, they cut our family," his mom Lori says.
Last month, Lori and Jacob testified at the capitol, but watching the crisis unfold since--they felt powerless. They turned to Youtube for help.
"There's no other way to give our input, or to make our voices heard," West says. "With the technology we have today, it just seemed like, why wouldn't you go on YouTube."
The video shows her caring for Jacob--cleaning his tubes and helping him breathe. She says the disposable supplies they use would be threatened by cuts.
She says they are already seeing cuts, particularly in a waiver they recently applied for. That, she guesses, is the system preparing for the inevitable. Anything more, she says, is not just dangerous, fiscally irresponsible.
"If we don't have what we need to take care of our children...at home, we end up in the hospital--and that costs 5 times more."
This virtual protest is a last ditch effort but West wants the politicians to know.
As Jacob explains, these are people, not things.