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Making every minute of every day the best it can be for their 2-year-old daughter, Megan, is unquestionably the top priority in the lives of her parents, Terri and Pat Garrett.

They never know what the next minute, hour or day might bring.

Diagnosed at 9 months old with mitochondrial disease, an incurable, progressive and degenerative condition that affects cells responsible for creating more than 90 percent of the body's energy, Megan is severely sight- and hearing-impaired, has a gastroesophageal reflux disorder, undergoes frequent seizures and is dependent on a feeding tube for nutrition.

Megan's immune system also is compromised, making her subject to recurrent illnesses. In February, she was diagnosed with viral pneumonia that resulted in a tracheotomy to open her airway and remove secretions from her lungs. A ventilator that runs day and night supplies oxygen to her body.

Her seizures often cause mucous tissue to lodge in her breathing tube, a condition requiring someone trained in use of the equipment immediately to disengage it and clean the tubing.

If not, the consequences could be fatal.

"She needs around-the-clock monitoring," said Terri Garrett, who is constantly by Megan's side during the day and at night, sleeping beside her daughter in Megan's bed with her hand planted firmly on the child's chest.

On weekdays, due to her husband's work schedule, Terri is responsible for Megan's total needs both day and night. On weekends, Pat takes over so his wife can get some sleep.

The couple say they are in desperate need of skilled nursing care for Megan, especially during the overnight hours. It would allow more time for Terri to rest and perhaps even devote some early morning hours to her husband and their two sons, James, 12, and Ryan, 7.

The Garretts' insurance plan does not cover the cost of hiring a full-time night nurse. Coverage would occur only if the couple and their children were indigent, but Pat is determined to continue running a family business.

Hiring a night nurse "would cost us $306,000 a year, and we can't afford it," Terri said.

Pat laments the gap in many insurance plans for middle-income families. He questions the logic of requiring his family to be destitute in order to qualify for the needs of their daughter.

"The system is broken. It's not fair and balanced anymore," he said. "Why should I be penalized, especially when I'm paying for everyone else who doesn't have insurance?"

Pat's mother, Judy Conville, who lives close by, wonders how Terri keeps going with so little sleep.

"I stress over their stress," she said. "I just hope and pray they'll receive the help they need."

Temple Terrace Councilwoman Alison Fernandez, the mother of four boys, is a friend of the Garrett family. The families' sons often play together, and Fernandez frequently transports them all to sports practices and other outings.

"I don't know how she does it, but people do what they have to do. It's a life or death situation," Fernandez said. "I guess the big thing is that this family epitomizes what it can mean to be caught in the middle of the coverage gap. Hopefully, something good will come of this."