WASHINGTON — When President Donald Trump delivered an anti-Obamacare speech from the ornate Blue Room of the White House last week, he was joined by members of four different families he referred to as “Obamacare’s victims.”

Among them were Marjorie and Kevin Weer, a couple from Mount Pleasant whose 3-year-old son, Monty, has spina bifida, a condition that prevents the spine from properly developing and presents mobility challenges.

“Washington Democrats promised families like the Weers that if they liked their doctor they could keep their doctor, but now there is only one insurer left in the state exchange,” Trump said, gesturing to Monty Weer, a curious little boy who kept trying to maneuver his wheelchair away from the pageantry to explore the rest of his environs. “More Obamacare lies.”

But Marjorie Weer, who has taken on the role as family spokeswoman, doesn’t think of herself as a victim. The law formally known as the Affordable Cart Act has helped her family, she said.

Because Monty was born with spina bifida in the era of Obamacare, he has never been denied coverage because the law prevents discrimination against those with pre-existing conditions. Marjorie and Kevin have also never been told their insurance provider has exceeded the amount of money it will spend on Monty’s care, since the health law did away with lifetime spending limits.

Monty also benefits from Medicaid, the federal health insurance program mainly geared toward helping the poor and the elderly, but that also covers many children with disabilities.

If anything, Weer said she considers herself a victim of “congressmen and women who have no business, probably, messing with the health care system.”

Weer said that while the health care system had problems before Congress passed Obamacare in 2010, many of the new policies instituted through the new health law have been a disaster.

Because of Obamacare, Weer contended, “the pool of doctors to choose from is getting smaller."

Weer said Monty has never been without care but stressed that she and her husband should be able to choose which doctors she thinks are best for him. In the past, they have had Monty seen by a physician at the Shriners Hospital in St. Louis and by a premier spina bifida clinic in Boston.

Late last year, BlueCross BlueShield South Carolina informed customers with HealthCare.gov coverage that they would no longer qualify for out-of-state care, except in rare cases. That means Monty can no longer see the doctor in St. Louis, and Weer had to fight for an exception this year for a covered visit to Boston.

“There’s uncertainty and not knowing how to plan,” she continued. “The doctors that we were able to see this year, I don’t know if I’m going to see them next year. And our monthly premiums have increased by 23 percent.”

Weer wants pre-existing conditions and the ban on lifetime spending caps to be preserved in any health care overhaul legislation. She doesn’t want to lose Medicaid. She wants her premiums lowered.

In short, she doesn’t just want Obamacare repealed. She wants it replaced with something better, something that would help her family and those like hers.

She, like so many others, doesn’t know what that would look like.

Ear of the president

The Weers got their first taste of the spotlight in February, when the Daily Signal, the in-house news service of the conservative think tank the Heritage Foundation, wrote a story about the family’s struggles getting Monty care outside South Carolina.

Then, in June, the White House was seeking "Obamacare victims" to travel to Washington for a listening session with Vice President Mike Pence. Heritage, which has close ties to the Trump administration, recommended reaching out to Marjorie and Kevin Weer, a massage therapist and inspector, who also have a 17-month-old daughter.

“When it was my turn to speak, I felt like it was just (Pence) and I in the room and I had his undivided attention,” Weer recalled. “I felt like I had his attention and his empathy.”

A month later, they were invited back to meet Trump. "I felt the president was as frustrated about what is not happening in Congress as many of the American people are," she said.

Weer described negotiating on Monty's behalf as another full-time job, spending hours, for days on end, fighting to be heard. So she felt validated when some of the most powerful people in the country were listening to her and taking her seriously.

It didn't matter that she was standing beside a polarizing president, who was painting her as a "victim" in such broad strokes.

“Standing there with Donald Trump, I know half of American loves him, half of America hates him,” she explained. “There are things about President Trump that I absolutely love and support. Of course, there are things I absolutely disagree with. But I got invited to the White House. I’ve had the ear of the president, the vice president, (Health and Human Services Secretary Tom) Price.

"I don’t have to 100 percent agree with everybody to work with them. If you have that opportunity, even if you are very left wing and a Republican president invites you up to listen to you, I think the thing is, you take it."

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The fight goes on

Just like the health care system itself, Weer’s attitudes toward it are complex.

She describes herself as a conservative, libertarian-leaning, “small government gal” who would have been happy to see Congress pass a bill that simply zeroed out the financial penalty for individuals and businesses that don’t buy insurance for themselves or their employees.

At the same time, Weer said she understood that just ending the individual and business mandates would not solve the problem that her family is facing.

She underscored her family's appreciation for Medicaid. but as a fiscal conservative she recognized the program had to be reined in. She was looking for tax credits for people who donate to charities that help provide care to people like her son, like the Shriners Hospital with locations across the country, including South Carolina.

“I do know if we do nothing, it’s only going to get worse,” said Weer.

She she also made something clear: “I don’t want a deal. I want the best deal. My concern is we will replace a really bad bill with a kind of better bill, and that’s not what I want. What I want is the best possible bill that will help all Americans.”

Ultimately, Senate Republicans were unable to seal the deal last week, failing at the eleventh hour to get the necessary votes for a pared-down health bill intended to facilitate a debate with the House on a more comprehensive fix.

In the meantime, she said she’d keep fighting for Monty’s care and being her family's own best advocate.

"The people making these decisions, none of them have my best interests in mind," she said. "The only person who has my best interest in mind is me."

Lauren Sausser contributed to this report from Charleston.

Emma Dumain is The Post and Courier's Washington correspondent. Reach her at 843-834-0419 and follow her @emma_dumain.