Families pay the price after lawmakers break promises to help - KCTV5

Families pay the price after lawmakers break promises to help

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KCTV5 News is holding politicians accountable. Parents of sick kids asked our investigative team to help them find answers. They want to know how politicians pass a law, congratulate themselves and then nothing happens. (KCTV5) KCTV5 News is holding politicians accountable. Parents of sick kids asked our investigative team to help them find answers. They want to know how politicians pass a law, congratulate themselves and then nothing happens. (KCTV5)
FAIRWAY, KS (KCTV) -

Parents of sick children want to know how politicians pass a law, congratulate themselves and then nothing happens.

Turner McDaniel and Beckett Schmuke both need expensive, special formula to survive. Politicians promised to help their families 16 months ago.

"What's going on? You sign this bill into law and nothing's happening," Turner's father, Chris McDaniel, said.

McDaniel wonders what went wrong.

Even though Bennett is two years old, and Turner is four, they wear the same size shoe.

"Growth chart wise, he's not even on it," McDaniel said.

Turner struggles to grow. He has short gut syndrome. He can’t absorb the nutrition from many foods.

Turner spent the first seven months of his life in the hospital and has had five surgeries.

"He's a fighter. He's been through so much ... he's been through so much," McDaniel said.

The game changer was Neocate, a prescription based formula, but it is expensive.

"If it was up to the doctors, it's three or four times the formula he's got, ut we just can't afford it," McDaniel said.

They’ve hunted online for deals and both parents work and don’t qualify for low-income programs.

Each can is about $40, and they’ve spent as much as $600 a month on prescription formula.

"We're going to do what we have to do to do the best for him," Turner's mother, Jayna McDaniel, said.

Insurance covered Neocate when Turner was an infant and fed with a feeding tube, but when he could swallow the formula, insurance coverage ended.

The McDaniels and their doctors fought the insurance company and lost and then came hope with Missouri Senate Bill 354.

"I was extremely hopeful. After we heard that we thought, 'There's half our mortgage a month we can spend on college or something else,'"  Chris McDaniel said.

Beckett has a rare condition where his esophagus rejects most foods. He struggles with deadly food allergies so there are pricey EpiPens and expensive formula.

"It is liquid gold, literally liquid gold," Beckett’s mother, Katie Schmuke, said.

Beckett was consuming $800 dollars in Neocate every month. Once again, an insurance company declined coverage, so his dad worked three jobs and his mom headed to the Missouri Capitol.

Schmuke testified about mounting medical bills and that Beckett’s life-saving formula was financially breaking her family. She cried when the bill passed.

"We were ecstatic. I was literally bawling," Schmuke said.

"Nixon and them passed it through, patted themselves on the back ... a big ribbon for them. They used it to their advantage once the limelight was gone, so to was the cause. And we have yet to see anything further and that's frustrating," Chris McDaniel said.

Turner still needs formula and so does Beckett. It is a nutritional need covered by state law but there is still no program.

"Each time that we've called, we get blanket answers. We get different answers," Schmuke said.

The children's parents worry that this is no longer a legislative priority.

"It's just made it very easy to brush this to the side and not actually follow through with this because there are not thousands of people banging on the door," Schmuke said.

The governor’s office points to Missouri Senator David Sater who sponsored the bill saying there’s no funding mechanism.

Sater blames the Department of Health using words like "dragging feet." He declined an interview with KCTV5 News even though he’s in Kansas City.

The Department of Health sends the blame right back to the Capitol saying someone needs to pay for the program.

And now these families are stuck with the bill.

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