Eleven-month-old Christopher Bledsoe sleeps with a monitor because at any time he could stop breathing and his heart could stop. He is fed through a tube in his stomach.
"Our life is upside down. You think you're going to have a beautiful baby and bring him home from the hospital and that doesn't happen," says Crystal Bledsoe, Christopher's mother.
Christopher and his brother, Michael, both have a rare genetic disorder called mitochondrial disease. Unlike other states, North Carolina does not have day care for children like Christopher. His mother, Crystal, quit her job to stay home and care for her son.
"We struggle paycheck to paycheck. We do the best to pay the medical bills, so our children can be seen. Every other bill comes last," she says.
Pediatrician Michael Artman is seeing more medically fragile children. He says we have created the technology to keep them alive, but not the infrastructure to care for them.
"As medical technology gets better and better, we're going to have more and more of these kids in the community who have the special needs that don't fit into the routine day care settings," he says.
Bledsoe has a nurse who comes to her home a few hours a week, but it is not enough. She helped write a bill to create the first pilot medical day care facility in the state for families who need another income and a break.
"It's a hard life and it's never-ending. There is no vacation from it," she says.
More than $400,000 has been included in the current version of the state budget to pay for a pilot medical daycare program in Raleigh, but Bledsoe is not stopping there. She is looking for a building and other funding sources to make her dream become a reality.