Through some perverse misalignment of the stars my 8-year-old son was diagnosed with a deadly disease shortly after I’d lectured him on karma.
“Is this really how it’s supposed to work, Mom? I thought you said you get karma when you do bad stuff? But I didn’t do anything!” he said. “Did you do something, Mom?!”
With two ICU visits under our belt and rapidly swelling medical bills reminding us that health care is often a luxury and not a right, I couldn’t help but think that yes, I must have, surely I did, because that’s the only explanation for why we no longer have a future. Why, now in addition to worrying about whether or not my son will live to see his 9th birthday, I have to worry about the prohibitively expensive medical procedures he’ll need and the inevitable fight to have them covered.
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And whether or not the next president will sacrifice my son’s health—or life—for a short-sighted conservative circle-j---. Which is exactly what’s in the cards if Donald Trump retakes the White House, as Speaker Johnson made abundantly clear Wednesday when he promised “massive” changes to health care and the end of Obamacare.
That would render my son an inconvenience, a “chronically ill” child with no protections in place to ensure he’d have health coverage. He falls into a very small category of young boys afflicted by ABCD1-linked adrenoleukodystrophy (ALD), a disease that, if it took on a physical form, would probably look a lot like the grim reaper.
Most U.S. states only began screening newborns for X-ALD relatively recently, and a few currently do not screen for this devastating disease—meaning some of the approximately 1 in 17,000 baby boys who have it are oblivious to the ticking time bomb they carry inside. About one-third of boys with X-ALD develop the cerebral form of the disease, which strips them of their faculties, one by one, before essentially rendering them brain dead.
To insurance companies, ALD is a bright red flashing liability, or what JD Vance described last month as constituting a separate “high-risk pool” of health coverage, i.e. a way to single out the sickest of the sick in order to preserve affordable care for those lucky, healthy people.
At its best, ALD requires intensive, lifelong monitoring and care that costs exorbitant sums of money. At its worst, it condemns young boys to a slow and drawn-out death that is impossible to prevent unless you’ve caught it early enough.
Even then, it’s so rare and under-researched that only a handful of specialists in a select few U.S. cities are experienced in performing life-saving treatment, leaving families at the mercy of insurance companies that have the final say in whether or not to cover the procedure. (It’s often a resounding “no” if you happen to live in an area without ALD specialists to fight for your child.)
In the hellish monitoring period, devastated parents are left to watch and wait for the disease’s most brutal progression: for the child’s vision to start to fade, or their hearing to suddenly falter, their legs suddenly unable to move. Then begins the steady march toward total and utter decline, and death.
My son’s life can still be saved. His early diagnosis was the result of an absolute Hail Mary pass by doctors at a Chicago-area hospital who suggested genetic testing might be our last hope of explaining what all other tests could not after he was twice hospitalized with puzzling symptoms.
The gut punch from that fateful phone call informing me of my son’s “extremely rare genetic mutation” was softened only by the reassurance that a stem cell transplant can save him. Between stress vomiting and hyperventilating, falling to the floor and gasping through sobs “please don’t take my son” at some random spot on the ceiling, I at least had something to cling to.
But that is thanks only to our access to Medicaid—which is under threat if Trump and his allies have their way, and federal funding to Medicaid is cut under the guise of “increased flexibility.” Or the ACA is repealed altogether, and my son is effectively punished for his disease.
Without the ACA, there’d be no protections in place to stop health insurers from denying coverage or imposing pay caps for those with pre-existing conditions, leaving a young child like my son with no care. Health insurers would be enabled to discard him like trash, which perhaps would not faze someone like Trump, notorious for mocking those with disabilities.
We’re living in a gray zone ahead of the presidential election next week that threatens to disrupt our access to affordable health care. We do our best to continue living a “normal” life, but sometimes as I watch my son smiling and laughing, I grow nauseous at the realization that he might soon lose those most basic functions of expression. That these might indeed be his last “normal” months of childhood. We won’t know until his next MRI tells us how quickly we have to scramble to save his life. Or if we might just have a little more time.
In the end, I had to confess to my son that karma is utter bulls--t and I’d only embarked on that whole spiel to do what parents have done for generations and use fear to control a child’s behavior. He didn’t believe me, at first. He thought I was just trying to protect him, that he had, indeed, done something to warrant falling ill with such a cruel disease.
“I’ve done terrible things,” he said, his eyes far too serious and repentant for a third grader.
“No, you haven’t! Like what?” I said.
“I gave Bentley the finger at school and used the F word,” he said.
And here I could not resist. I told him the man who wants to be our next president—the man whose vague “concepts” of health-care reform would include depriving millions of access—has done much worse, to many more people, and would likely do more if given the chance.
Pointing to a clip of a carefree Trump dancing around on stage at one of his latest rallies, I asked my son: “If karma were real, do you really think that guy would be untouched?”
