Ryan Bates can normally be found behind the scenes as executive director of Michigan United, a statewide organization that fights injustice and indignities. But Bates decided to flip the script to speak out today against proposed efforts in Congress to repeal the Affordable Care Act, also known as Obamacare.

Bates and his wife, Elizabeth Campbell, came forward at an event hosted by Michigan United to share their story about Jimmy, their 18-month-old son who was born 14 weeks premature. The unexpected early delivery led to a host of medical complications — Jimmy contracted meningitis from his weakened immune system, and the antibiotics he took to fight the infection caused permanent hearing loss. The couple's sleepless nights are now accompanied by new fears about their son's future.

"I know that we're a generous country. I know that Americans (view) health care as a human right. I know that we take care of each other.

"The proposed bills in the House and the Senate don't reflect who we are as a country," Bates said.

Today's news conference, which included a speech by U.S. Rep. Debbie Dingell, a Democrat from Dearborn, aimed to amplify the voices of some of the most vulnerable members of society — special-needs kids and premature babies — to highlight how the Republican health care proposal would adversely affect their lives and their families' livelihoods.

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"During that whole set of trials of experiences, we were really worried. We were worried about what our son's future would be — would he be able to have a normal life? Would he be healthy? Some days, we worried: Would he survive?" Bates said, choking up as he looked at his son bouncing in Campbell's lap.

"One thing we didn't have to worry about was: Would the hospital bills bankrupt us and would our son be insurable? That's thanks to the Affordable Care Act."

Repealing the Affordable Care Act has been a goal of the GOP party for years now, with Republicans calling it a "job killer" for imposing what it sees as too many costs on businesses. They have also decried the plan, which requires all to have health insurance plans, for encroaching on the decision-making of private businesses and individuals. Insurance premiums and deductibles have also risen under Obamacare, drawing the ire of many working-class Americans.

Repealing the bill was one of President Donald Trump's key promises on the campaign trail. He called Obamacare a "complete and total disaster" and pledged to nix it within his first 100 days in office. But 165 days in, the Affordable Care Act is still the law of the land.

Efforts to repeal the law have been rocky in both the House and Senate. In June, Senate Republicans unveiled a new repeal-and-replace plan that has drawn heavy criticism. Last week, the Congressional Budget Office (CBO) revealed that the current GOP bill would leave 22 million more people without insurance. Public backlash to the news forced GOP leaders to cancel a Senate floor vote on the bill. Two days later, the CBO released a second study that found that Medicaid funds would be slashed by 35% over the next 20 years under the plan.

Trump, however, has remained optimistic about the bill, saying last week that he thought the "Senate bill is going to be great." While he also noted that there was still work to do, he added, “I think we have a chance to do something very, very important.”

This sentiment was reiterated by Senate Majority Leader Mitch McConnell, R-Ky., who made the decision to pull the Senate bill from a floor vote last Tuesday — the same day the first CBO study came out — but remains optimistic.

“I think we have a very good chance of getting there,” McConnell told Fox News, noting that the CBO study had some positives, like cutting the federal deficits by $202 billion over the next decade.

The focus on dollar signs over people is a fear for some Americans like David and Meghan Sanchez, parents of Benicio, a bubbly 4-year-old with autism.

While the Sanchez family noticed Benicio had some quirky mannerisms, it wasn't until he was 3 and wasn't developing at the same pace as his peers — specifically with talking — that they decided to get help.

"I don't like labels, but in this situation, my feelings didn't matter. My wife's feelings didn't matter. We just had to get him the help he needs," said David Sanchez, describing the long process — nearly a year — to get a diagnosis of autism.

For the last three months, Benicio, who will be 5 in October, has gone to Applied Behavior Analysis (ABA) therapy for 30-35 hours a week. The intense one-on-one therapy aims to help him speak and process his behaviors. It also costs roughly $120 an hour. "It's almost impossible to privately afford it," said Sanchez.

He said Benicio's improvement since starting the program has been incredible.

While the family has insurance through Meghan Sanchez's job at the University of Michigan's C.S. Mott Children's Hospital, behavioral programs like Benicio's are not covered. For that reason, MIChild and federal funding helped pick up the costs. The family fears the loss of funding from subsidized programs like this.

"It wouldn't give kids like Benicio a chance to become self-sufficient," David Sanchez said, noting that his son has special talents to share with the world but needs therapy to do that. "I don't want other children, other families like mine not to have this in the future. I don't want Benicio to stop being able to go to programs like this in the future. This is definitely the best investment we can make."

At the Michigan United event, cuts to Medicaid weren't the only focus. Speakers also discussed what they see as the necessity of protecting patients with pre-existing conditions and preserving the ban on lifetime limits.

If the Affordable Care Act is repealed, children like Bates' son Jimmy could be denied coverage for being born too early — something that was considered a pre-existing condition prior to Obamacare, advocates said. His hearing loss, something that is expected to be with him for the rest of his life, would also be considered a pre-existing condition.

Lifetime limits on how much an insurance company will pay for one's health care are another fear. They do not exist with the Affordable Care Act but could be brought back.

With previous lifetime limits typically capping out at $1 million to $2 million, the re-introduction could be devastating for families. Bates pointed out, for example, that Jimmy has already "blasted through $1.5 million of coverage" from Blue Cross Blue Shield of Michigan.

While Bates acknowledges that having independent health care through his wife's job puts the family at an advantage, the proposed bills bring uncertainties.

Uncertainties, Dingell said, should never cross the minds of a parent.

"If you live in this country, you have a right to quality, affordable health care," Dingell said. "Every child should be able to go to the doctor ... to receive the care that they need, the medicine that they need, the training that they need. They need to be taken care of."

The Blue Cross Blue Shield of Michigan medical bill Ryan Bates and Elizabeth Campbell received for their son James. The 18-month-year old's bill hovers close to $1.5 million.