COVID-19 and SMARD1: Why an Ordinary Cold Isn't Ordinary for My Son

An elderly woman on the subway coughed into her handkerchief, and everyone around her scattered. I was off that train and onto the platform faster than the cast of Train to Busan running from zombies. You might think I’m overreacting — if I catch the coronavirus, there’s still a chance I recover. But COVID-19 would absolutely kill my son, who has been on a ventilator ever since his tracheostomy.

A Complicated History with Pneumonia

Every time COVID-19 comes on the news, my mind flashes back to the time my son nearly lost his fight with pneumonia. He’d been hospitalized for over a month and had just recovered; we were joyfully filling out the discharge paperwork to finally bring him home. At ten months old, he sat in his stroller, happily being wheeled in loops around the nursing station.

Then, suddenly, his lips turned blue and he went into respiratory distress. We screamed for help, and the nurses and doctors came running.

It turned out bacteria had been hiding in his lungs, waiting out the course of antibiotics before flaring up again and producing mucus. One of his lungs had already collapsed, and his low muscle tone meant he couldn’t cough the mucus out no matter how hard he tried. His condition spiraled fast into respiratory distress — he couldn’t breathe on his own — and the doctors intubated him as an emergency measure. Two months after intubation, a tracheostomy was the only option left. Caring for him after the trach was brutal, and in the early days he cycled in and out of the ICU with pneumonia over and over.

Different Causes, the Same Deadly Respiratory Distress

Cold symptoms. Mucus building up. Coughing that doesn’t quite clear it, the patient trying to cough but failing. Gradually feeling short of breath, then real difficulty breathing. Once it progresses to respiratory distress — unable to breathe independently — the only options left are intubation and an isolation ICU bed. Without oxygen and intubation fast enough, the patient dies. Does that sound familiar? It’s almost exactly the trajectory of the coronavirus.

The causes, though, are completely different. The novel coronavirus is an infectious disease that spreads person to person. SMARD1, the rare disease my son has, happens when both parents carry a mutation in the same gene and each passes it down to their child.

So What Exactly Is SMARD1?

As a parent, it’s genuinely hard to accept a disease this lethal. SMARD1 — Spinal Muscular Atrophy with Respiratory Distress type 1 — is even rarer than SMA. Once it manifests, a child’s lungs can suddenly collapse, sending them into fatal respiratory distress. Most affected children die in their sleep, unable to breathe, usually before their first birthday.

I often think that some of the babies who die of sudden infant death, or while co-sleeping face-down, may well have had this exact condition. Unfortunately, whole-genome screening can only confirm the diagnosis in a living patient. Right now there are only around 60 known children with SMARD1 worldwide — calling it a one-in-a-billion condition isn’t an exaggeration. Taiwan has exactly one confirmed case: my son. And that count doesn’t include the babies who may have died of the same thing in their sleep, undiagnosed.

Update, 2026: When this was written I believed genetic testing was only possible while a child was still alive. That is no longer the case. DNA can be extracted from the dried blood spot taken at newborn screening, which means a cause can sometimes still be found after a child has died. See When a Baby Dies in Their Sleep, Can a Cause Still Be Found?. The paragraph above is left exactly as it was written in 2020.

You might be wondering: 60 children worldwide, and no adults? In our support community, the oldest child anyone has known was 17. Over the past year alone, we’ve lost children who were two, four, and eight years old. Kids on ventilators have extremely fragile immune defenses — every cold, every bout of pneumonia, chips away a little more at how much life they have left.

Just like COVID-19 — a patient may recover, but their lungs can be left with permanent, fibrotic damage.

So when I bolted off that train at the first cough, I wasn’t overreacting. I wasn’t scared for myself — I was terrified of carrying the virus home to my son. One bout of COVID-19, and he would not survive it.

If you’ve traveled recently or have any symptoms at all, please self-quarantine. If you agree that protecting yourself means protecting others too, please share this post. Thank you.