Posted: May 8, 2008 04:46 PM
by Amy Barrilleaux
Every morning, 13 month-old Stella Turnbull's mom and dad un-hook her from a machine that helps her breathe. Another monitors her vital signs.
"Are you trying to wake up?," Sarah Turnbull asks her daughter, as she removes the special head gear that keeps the tubes in place.
The family calls this routine their "new normal."
"It's amazing what you become acclimated to and what becomes just regular part of routine life," Sarah says.
Life has been this way for a year, ever since Stella was diagnosed with type 1 spinal muscular atrophy, or SMA. It is a very rare genetic disorder and is almost always terminal.
"She used to be able to lift her head up and do all these things, and she can't anymore," Sarah recalls. "We literally were told she was going to live weeks or months."
"She may not be here tomorrow," says Stella's dad, Travis. "So we really try to take advantage of each day."
But taking advantage of each day hasn't been easy. Stella's mom is forced to balance caring for her daughter with battling the family's insurance company.
Basically, I don't have time, is the problem," Sarah says."Stella's disease, I mean, we save her constantly."
They save her using a machine that simulates a cough when Stella's lungs fill with fluid.
It's a machine her inurance company initially, wouldn't pay for.
"We have had to file letters of medical need and do a lot of leg work just to get her the equipment she needs," Sarah explains.
Another battle -- Stella's specialist. She is one of only a handful of doctors in the country who specializes in SMA, but her office is in Wisconsin.
"It's not covered," said Sarah. "It's not in-network."
So far, the family has paid thousands of dollars out of pocket to get Stella the care they believe she needs.
And they insist they are the lucky ones. Travis has a good job with a good company -- a company that provides top-of-the-line health insurance coverage. The insurance company has paid out hundreds of thousands of dollars for Stella's care, but it doesn't cover everything. The family is left to fill in the gaps.
According to a Harvard University study, every 30 seconds, someone in this country files for bankruptcy in the wake of a serious health problem. 68 percent of them have insurance.
"This is basically all of her medical reports," says Sarah, as she thumbs through a heavy, 3-ring binder filled with hundred of bills and insurance statements.
"Just to keep it all straight," she says. "Because the minute you don't keep it straight, there's something that's charged a couple times."
But keeping it all straight and caring for Stella -- and remaining hopeful that all of this will make a difference for her daughter -- takes a big toll.
"Trying to get something approved so that it's in network or just trying to get something approved at all -- These are frustrating things to have to deal with on top of it," Sarah admits.
So far Stella has lived longer than anyone predicted.
And even though the family is already a third of the way to spending the lifetime cap on their insurance, Stella's mom an dad say she inspires them every day to keep fighting.
"You know, I look at her and I see the things that she goes through, and I think to myself, 'If she can battle this, I can at least help her.'" Sarah says. "She's amazing."