My 8-Year-Old Son Has a Fatal Disease—I Want Us to Go on a Crime Spree

Aedrik Quinn, 8, has the rare life-threatening disease cerebral adrenoleukodystrophy (ALD). This is the first of a series of columns by his mother Allison about their experiences as they undergo treatments, confront the unimaginable—and live their lives.

For a moment I seriously considered taking my 8-year-old son on a crime spree. A mother-and-son cross-country road trip, but with a few semi-spontaneous bank robberies thrown into the mix. A joy ride in a stolen car.

Maybe stealing the Mona Lisa, or at the very least, throwing something at it.

Hours earlier, I’d received word that my son is officially terminally ill. A rough bout with the flu, followed by a similarly rough bout with COVID-19 months later, had prompted genetic testing to determine why my child’s body could not metabolize properly when affected by a virus, why his electrolytes would get so out of whack he’d begin hallucinating.

I assumed they’d find nothing, that doctors’ reassurances that it was all a fluke would prove to be true. But after wrestling for years with fears over the usual bogeymen—a school shooting, a freak car accident—my son was diagnosed with a rare genetic disease. And its only claim to fame is killing little boys.

Our bogeyman has no face. It’s not a product of a troubled society or lax gun laws or drunk drivers but a random act of devastation, nature’s most indifferent death by a thousand cuts. A single missing enzyme in his genetic makeup whose absence portends doom for the rest of the body by killing off cells. An under-researched, wildly unpredictable disease called X-linked adrenoleukodystrophy.

Once the clock starts on the cerebral form of the disease, there’s no stopping it. It eats away at the very soul of a child by shutting off the brain little by little, turning out the lights, like some twisted Brothers Grimm fairytale creature.

In reality it’s just a missing enzyme. The villain behind the untold suffering of tens of thousands of parents who’ve watched their sons slowly slip away into nothingness is just a missing enzyme.

And this is where we find ourselves now—with approximately two years until my son’s brain is fully consumed by disease. He has a shot at survival with a stem cell transplant, our only hope, but should that backfire, should that go wrong, those two years will be cut down to a few weeks and he will be dead around Christmas time.

The only appropriate response to such news is to purchase a used set of golf clubs at the local Goodwill and proceed to smash everything in sight.

“It’s like a rage room!” my son cheered, swinging gleefully at porcelain cups I’d stacked on our porch, understanding only a tiny fraction of the horrors that await him. Oblivious to the fact that the “scary surgery” he must undergo might not be successful. That it might fry his internal organs, or do nothing to stop the evil villain that wants to devour his brain.

“We have a very rough road ahead and we will be going to a dark place for a bit, but I will be with you the whole way,” I told him.

“Do I get to miss school?” was his only concern.

I probably should have been committed for any number of thoughts that flitted across my mind in the wake of his diagnosis. I’m quite certain I didn’t win any mother-of-the-year awards for deliberately plowing through a red light when I saw a cop on the opposite side of the intersection, hoping to give my son a funny memory.

“We’re going to get pulled over now so you can see your mom get busted,” I told him.

But nothing happened. We did not get pulled over. No flashing red-and-blue lights came to puncture our grief. Instead, the festive rainbow-colored Christmas lights entwining the street lights glittered and twinkled and taunted us as we drove home.

You enter a different plane of existence when your child suddenly faces a death sentence, an inverted reality devoid of light. Whatever rules existed before feel laughable now.

No, everything does not happen for a reason. No, whatever doesn’t kill you absolutely does not make you stronger. And don’t even utter the word God.

That nagging fear you’ve always had of your child getting bullied in high school, or becoming an obnoxious YouTuber, is suddenly replaced by the very real fear that he will live out his final days long before he reaches puberty, and that he will do so in a vegetative state.

You wonder how many experiences, and what kind, can fit into the time he has left, how much of it would technically be breaking the law, but how you can do it anyway, just to make a short life less tragic, accelerate those profound milestones he may never reach.

Yes, of course we can smash the Mona Lisa.

Of course we can egg your friend’s house.

Sure, we can rob that bank, if that’s what you wish.

You humor all these fantasies with a steady roaring in your ears, a sense you are at once being sucked up by a tornado and struck down by a train. You hear on a frequency you’d rather not know existed, a frequency where the heart-piercing shrieks and wails of mothers and fathers of ALD boys who’ve come before you play on an endless loop. Where unanswered pleas ring out from the moms seated by their child’s bedside long after all brain function has ceased, still begging anyone who will listen not to give up.

So perhaps you’d be forgiven for having unwelcome thoughts.

Would he rather be cremated or buried?

Did he have a good life?

And the one I am most ashamed to admit: Can I give up? Can I curl up in a ball in the corner and rock myself back and forth into oblivion, until I am so far gone I am tossed in a psych ward and pumped full of antipsychotics so I don’t have to witness the horror of what my son will go through?

It’s tempting.

But then I remember the very first picture I took after my son was born, while he slept peacefully next to me in the recovery room of a Kyiv maternity hospital. It was not a picture of his scrunched up little newborn face, but his tiny little finger wrapped in the palm of my hand, clinging to me for warmth. The first time of many he would seek comfort from his mother when nothing else in the world made sense.

That’s the job; that’s what it means to be a mother. Not buying your kid flashy Christmas presents and baking him cakes. Not putting a roof over his head, getting him to school on time, and helping him with his homework. Or giving him sage advice.

But holding his hand when he’s scared. Standing firmly by his side even when his pain is too great for your heart to bear it, staying there through the worst of it, eyes wide open, chin held high. It’s sitting there, in this dark place, holding his hand and bracing for the impact of whatever that thing is at the end of the tunnel, be it a light or an oncoming train.