JOHNSON COUNTY, Mo. – You’d think the hardest part would be the diagnosis: being told two of your six kids may eventually lose their lives to a rare disease.
But a local wife and mother tells Fox 4 her biggest battle so far has been with her husband’s military insurance.
This time last year, 13-year-old Marissa Graczyk was walking into an emergency room. She went home a week later in a wheelchair, and one day her family said she’ll lose the ability to walk all together. Now, her family is struggling to make the best of the years she and her little brother have left.
Eric and Dawn Graczyk knew when Marissa was just four that something wasn’t right.
“We’re looking at 10, 15 years left with our daughter," Dawn Graczyk said.
The military family was stationed overseas, and after years of getting misdiagnosed, the 13-year-old came down with a cold last December that she just couldn’t shake.
“She wouldn’t sit up on her own," Dawn Graczyk said. "She was having trouble walking on her own. She’d walk a few steps then fall down really hard."
Marissa spent a week in the hospital and later got positive test results for Friedrich’s Ataxia – a genetic, debilitating disease that kills cells and causes scoliosis and ultimately heart failure. Dawn Graczyk said her daughter will probably live only into her early 20’s.
“There’s no treatment. There’s no cure,” she said.
The couple had all six of their kids tested for the disease. Marissa’s brother Jojo also has FA and will likely face the same fate.
"Two of the children are positive, two are carriers, and two have no genetic mutation and will never have any concerns," Dawn Graczyk said. "I’ve accepted the diagnosis, but the hardest thing for me now is that I can’t make the things happen that would make life better for them.”
The mom said modifications to their home and van are necessary.
“We’re able to lift her in and out of the car now, but at some point, she’s going to have zero mobility whatsoever,” she said.
The family said Tricare – the family’s military insurance – approved adding a wheelchair lift to the family’s van, but they can’t find a contractor to do the work. Dawn Graczyk said they believe Tricare’s reputation among service providers for not paying is the cause.
A Lenexa company, among others, has rejected the family.
“They said that they are no longer a Tricare-preferred provider because Tricare’s not paying what their work is worth essentially," Graczyk said. "They felt they were getting stiffed on prices.”
The Graczyks said their case manager told them to pay the $10,000-15,000 up front, then get reimbursed.
“If you talk to people in the military, you never pay up front and then try to get your money back from insurance," Dawn Graczyk said. "You’re not going to get it.”
The parents said now it's about making the most out of the time they have left and finding a way to do so in a home where the kids are safe and comfortable.
“The biggest thing for me is I want them to see things and do things and just cram all the things into this small time frame that they may not get to do later," she said. "Unfortunately, everything costs money. That’s the way of the world, you know?”
There is no treatment for FA, but the kids have physical therapy, take supplements and make frequent five-hour trips each way to see doctors.
Fox 4 talked with a sergeant at Whiteman Air Force base in central Missouri where Eric Graczyk is stationed; they said they’d look into Tricare’s response. Fox 4 will check back and update this story as we receive more information.