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Lee’s Summit girl with cystic fibrosis and family anxiously watch health care developments in Washington

LEE’S SUMMIT, Mo. -- With a health care vote now set for Friday, a local family is watching closely what happens in Washington. The outcome of the American Health Care Act vote could deeply change the life of a 9-year-old girl and her Lee's Summit family.

It`s been a roller coaster for Izzy Smith and her family. The 9-year-old has cystic fibrosis. From private insurance pains to relief found in the Affordable Care Act, and now more unknowns as Capitol Hill looks to change America`s health care again.

“She was 39 weeks, 6 pounds, 5 ounces, I was only in labor for six hours,” mom Deedra Smith said.

Izzy was a beautiful, healthy baby girl, born nine years ago to first-time parents, Deedra smith and her husband.

“She was a little small, especially for being full-term, but we thought everything was fine,” the mom said.

But days, and several tests later, the reality of their new lives set in.

“They called us and told us that she had cystic fibrosis. It still upsets me,” Smith said.

Cystic fibrosis is a life-threatening disorder that attacks the lungs and digestive system.

“Maybe they don`t realize her medication costs $300,000 a year. Maybe they don`t realize that she spends three hours a day doing breathing treatments. That she takes over 50 pills a day and that`s when she`s well,” Smith said.

Life isn`t easy, but her parents are planners. They`re sorting through the system.

“So we deal with all of that, and on top of it we get to deal with insurance,” Smith said.

Before Izzy was two they were told they almost maxed out her life insurance totals, but then the Affordable Care Act passed.

“It was such a relief because we went from a way to find a way to scramble and move to a different state to give her the coverage she needed, to knowing that she was protected under this new act. We didn`t have to worry about that anymore,” Smith said.

But now a new worry is looming as Republicans are pushing health care reform again.

“You want to see what $20,000 looks like?” Smith asked.

She poured out handfuls of pills, which her daughter takes by the dozens at a time.

“We need safeguards in place to protect the life of children like Izzy. Because there are 30,000 of them in our country. And it`s not fair to take their insurance away,” Smith said.

She has a message for President Donald Trump.

“This isn`t a promise about a business deal. Or about making billions of dollars. This is about a life. A child`s life. And the lives of the people that love her,” Smith said.

Seven years ago on Thursday, President Barack Obama signed the Affordable Care Act. House Republicans need 216 votes to pass the bill. Right now, the vote is too close to call.

FOX 4 will be following developments with the vote on Friday.