KATY, TX — A Katy, Texas, mom whose family is facing millions of dollars in uncovered medical bills to care for their 6-year-old son's incurable genetic disease under Republicans' plan to replace Obamacare used an open letter on her blog to eviscerate Vice President Mike Pence over his tweet touting the GOP plan as a "system based on personal responsibility."

"Because I really don't know how my six year old, who is non-verbal, non-ambulatory, exclusively tube fed, vision impaired and medically fragile, who relies on me and a handful of other caregivers for literally everything, is supposed to take personal responsibility for his own health." (For more local news, click here to sign up for real-time news alerts and newsletters from Dallas Patch, or click here to find your local Texas Patch . Also, if you have an iPhone, click here to get the free Patch iPhone app .)

"Personal responsibility, Mr. Pence?" Elizabeth Baker wrote in an epic tell-off that wields Pence's word choice as a weapon at every turn. "What exactly are you referring to here?

In it, Baker amplifies the fears of families across America who are balancing catastrophic medical care coverage on the three-legged stool of a health care system that stops insurers from price gouging for preexisting conditions and imposing lifetime caps on coverage and steps in with Medicaid waivers that pick up the costs insurers don't.

Grayson was born with Leigh's disease, a form of mitochondrial disease . Perhaps he wouldn't have been if he hadn't "slacked off in the the personal responsibility game," Baker wrote, dripping sarcasm in her " A New Version of Me " blog.

The Republican health care proposal to replace the Affordable Care Act strips away most of that — and the Baker family's means to care for their son. The Senate version of the Obamacare replacement would retain coverage for preexisting conditions without premium hikes but eliminates the essential benefits requirement insurers could use as a backdoor to avoid covering expensive drugs or place caps on drug costs per patient.

"If lifetime caps on insurance are allowed to be re-instated, and Medicaid is gutted, how is Grayson supposed to get the thousands upon thousands upon thousands of dollars (and honestly, it's likely millions) worth of healthcare products and services he needs to LIVE? Without access to the health care our private insurance and Medicaid provides, he will die. If I sound a little shrill and dramatic, it's because I am. Put yourself in my shoes, and the shoes of my friends with medically fragile kids."

The family of five lives on Ryan Baker's modest salary as a high school teacher and coach and her "very part-time" income as a freelance editor and writer, Elizabeth Baker told Patch.

His feeding supplies alone are $1,000 a month. The coverage also provides 74 hours of private-duty nursing a week and the cost of 13 different medications and supplements, some of them expensive specialty drugs, incontinence supplies like diapers and wipes, and suction and oxygen supplies. Medicaid also covers in-home therapy four times a week and therapy at Grayson's school. He goes to the doctor twice a month and has had a surgery a year in each of the past three years.

Grayson is covered on the family's primary insurance through Ryan's job, and Medicaid picks up what the primary insurer doesn't cover (under a waiver for children with disabilities, family income doesn't factor into eligibility).

Baker feels more like a nurse and care manager than a mother at times. She tries to get 30 minutes a day "of just holding him and singing to him, which is his favorite thing, and mine, too," she told Patch but lies awake at night worrying about his future under health care laws that could retract her family's safety net.

So it's understandable that she seethes at the notion that families like hers lack "personal responsibility."

"You want to know the weight of my personal responsibility?" Baker wrote, again pummeling Pence with the phrase. "The crushing weight that every single special needs mother feels, and can't unload? How I lie awake at night wondering, and worrying, about a child's future who has no future apart from me. How sometimes I feel more like his nurse than his mom, or his manager, with all the phone calls and paperwork I have to do on his behalf. How keeping myself healthy (physically and mentally) is so crucial, mainly because how would I take care of Grayson if I were sick or dead? What would happen to him? Don't you dare suggest that I haven't felt, or acted, responsibly."

Nothing Pro-Life About Plan

The Republican health care proposal throws an accelerant on Baker's slow burn after President Trump's election last November. She considers herself a Christian but finds she doesn't "really like a lot of Christians these days, because they are so unlike my Christ," she wrote to Pence. "And honestly, I'm sticking you in that category too. There is absolutely nothing Christ-like or pro-life about gutting Medicaid and making the sick and the poor suffer while the rich get richer."

She doesn't recognize her faith in the religious right's prosperity gospel — "work hard enough and be the right kind of person," Baker wrote, "and you will be rewarded."

Real life doesn't work that way.

"Good, hard working people get sick all the time and need expensive care, care that is often the reason they are poor," she wrote. "You think Jesus would agree that the value of Grayson's, or anyone's life, has a monetary limit?"

To Republicans in her part of the country, Baker wrote, Pence was seen as a saving grace in the most literal sense of the word — a pro-life Christian who would represent their values. They "voted for and tolerate that moron who picked you as his running mate, but you are the one they think is going to turn this country around, and make it 'great' again," Baker wrote in the blog directed at Pence.

"Pro-life" should be more than a one-dimensional political slogan that centers on the unborn, she said.

"Honestly, I think many pro-lifers fetishize the unborn because they are so uncomplicated. They are 'life' and that's it — they don't require expensive medical care, and they don't make decisions or have lifestyles contrary to a particular moral code," she told Patch. "Once born, all that changes, and protecting their 'life' doesn't seem so appealing anymore."

Baker's own middle-of-the-road approach to abortion reflects some of the complexity of the debate. She's personally opposed to to abortion but politically doesn't want to see the procedure outlawed.

"I get asked a lot, would I have had an abortion had we known about Grayson's disease when I was pregnant? The answer is no. But, I also have an amazing support system, access to one of the best medical centers in the world, and resources that enable me to raise my child at home, surrounded by a loving family," she told Patch. "And we have insurance and Medicaid so we aren't strapped with enormous medical bills we would never be able to pay on our own. All this makes a huge difference.

"And while I think it's tragic, I can certainly understand how someone would choose abortion when they feel like they have no options to raise a medically fragile child."

'This Is Not Political For Us'

As an advocate for her son, she has discovered huge gulfs in Americans' understanding of the Medicaid program as it as evolved as a political football in partisan debates.

"For example," she told Patch, "in Texas, 74 percent of those enrolled in Medicaid are children. Children are not taking advantage of the system or asking for handouts. Medically fragile and disabled children have hardworking parents who just want to give their kids a good life and actually keep them alive."

"This is not political for us," she said. "This is real life."

Baker tweeted her blog in a response to Pence's original "personal responsibility" tweet, and others have done the same. She hasn't heard back from the vice president but told Patch she "would love to have a conversation with him and 'introduce' him to Grayson."

Before summer's out, we'll repeal/replace Obamacare w/ system based on personal responsibility, free-market competition & state-based reform pic.twitter.com/JzCyxX9kJb

— Mike Pence (@mike_pence) June 24, 2017

After his initial tweet, Pence followed up by saying the GOP health plan reflects the "Republican way" and the "American way."

"This is not the America I want to raise my children in and they surely won't be told to embrace these values. Being sick or poor is not a character flaw," Baker wrote (emphasis original). "We are supposed to take care of each other; instead, you want only those who are rich, able-bodied, or have lived up to some arbitrary measure of 'personal responsibility' to have the America you are making to be 'great.' ... I am angry, and I will stay angry and fight like hell for my child and all the children and Americans who are being screwed by this inhumane, ridiculous bill. That, I believe, is MY personal responsibility."

Response to her blog has been overwhelmingly positive, Baker said.

"I read hundreds and hundreds of comments before I came across even one that was against the arguments in my post," she told Patch. "I think that's saying something, given it's been posted on public platforms, where you usually have a lot of contrary opinions.

"I just don't think there's any sort of moral argument for taking healthcare away from sick kids, or putting a monetary value on their lives."

She hasn't heard much from conservative Christians in her personal circle of friends, though.

"Their silence is louder than they realize," she said.

Families like Grayson's aren't the only ones to feel alienated by the GOP health care plan, watch the video below for more.







Photos of Grayson Baker used with permission.