Tracy-Care: Focusing on Care for a Sick Child, Not Worrying About Insurance

Tracy Wirtanen-DeBenedet’s story began four years ago when her 9-year-old son Sami was diagnosed with neurofibromatosis, a genetic disorder that causes tumors to grow throughout the nervous system, including the brain.  There is no cure for the disorder, but the tumors generally can be managed with surgery, chemotherapy and constant attention to head off severely debilitating or life-threatening complications. Sami didn’t grow for a year because of complications.

“He’s a kid, he’s just a normal kid, happy-go-lucky child, but he’s a kid that gets MRIs every three to six months,” she says, sharing her family’s story.

Residents of Appleton, WI, the Wirtanen-DeBenedets became tireless advocates for scientific research funding, support for families – they created the Littlest Tumor Foundation—and enactment of the Affordable Care Act. 

The Wirtanen-DeBenedets no longer have to worry about Sami being denied coverage because of a pre-existing condition.  The Affordable Care Act now makes it illegal for insurance companies to deny coverage to children because of pre-existing conditions, and in 2014, that protection will be extended to adults.

Tracy also doesn’t have to worry about Sami losing coverage because of a lifetime dollar cap on coverage—the Affordable Care Act prohibits that, too.

“So our job is to worry about finding the proper specialist, getting him to the MRIs, getting him to the doctors appointments, keeping him healthy, you know, having him be a joyful child,” she says. “We don’t want to have to spend our time worrying if we’re going to be thrown off insurance or if it’s going to be ‘capped off.’”

“It’s really hard to understand … why anybody would not support the Affordable Care Act … why would you not want a child to have health coverage?” Tracy says. “If there’s one thing that I could say about the act and about health care is that kids like Sami matter and that they should have insurance coverage and they should not be denied coverage.”

If you have a story like Tracy’s and Sami’s, share it at Healthcare.gov/MyCare.