More Than Success: A Startup Executive on Raising a Child With SMARD1

More Than Success: What a Startup Executive and a Rare-Disease Mom Have to Say

My son and I told our story publicly for the first time when we were featured in a well-known Taiwanese outlet’s opinion column — under the headline “More Than Success: A Startup Executive and a Rare-Disease Mom Speak Out,” as part of their Chinese Leaders 100 mentorship series.

I’m one of the lucky ones. Straight out of school I landed a job at a foreign consumer goods company, then moved into finance and became an MA — a management associate at a foreign bank, the kind of role my peers envied. Year after year I chased the next promotion, and before I knew it I was an “older mother” by medical definition. From the outside, I had won at life. Behind closed doors, no one had seen the nights I spent crying myself to sleep, quietly falling apart…

Because I’m the mother of a child with a rare disease. My son is only two and a half, and he’s already been in and out of the hospital more times than I can count. He has Spinal Muscular Atrophy with Respiratory Distress type 1 (SMARD1) — fewer than 60 people in the world have it, and he is the only case in Taiwan.

The Person Everyone Called a “Life Winner” Fell Into an Abyss

My son was born premature, weighing under 1,600 grams, his face scrunched up so tight he looked, honestly, like Gollum from The Lord of the Rings. After a month in the incubator, he went to a postpartum care center to fatten up, and somehow came out the other side looking like a handsome mixed-race baby — the nurses fought over who got to hold him, insisting he looked half-Western.

I hadn’t even finished enjoying how good-looking my son was before I noticed something was wrong: “Why doesn’t he look like his sister did?” His cry was faint, and his legs barely kicked. A bad feeling set in, and I began what turned into a year-long search for answers, dragging him to every specialist in the book while my husband complained I was treating the hospital like a farmers’ market and wasting the health system’s money.

Over that year, an orthopedist told us his hips were fine. A geneticist said skip the genetic testing and just start physical therapy. A plastic surgeon suspected a shoulder deformity and suggested a corrective helmet. And one neurosurgeon declared, with total confidence, that he had cerebral palsy — I cried for days over that one.

In his first year, when he wasn’t at some hospital chasing a diagnosis, he was hospitalized with a cold or pneumonia. By then I was back at work, running a team at a startup. Stubborn as I am, I refused to let my son’s condition make me look any different at the office, so I threw myself into work almost entirely. Looking back now, I know that was just me running away — because it is genuinely hard for a mother to accept that the child she gave birth to isn’t healthy…

There Was No Choice — You Just Keep Walking Forward

That time, my son was intubated in the hospital for over eight weeks, and the doctor recommended a tracheostomy outright, to avoid the infections that come with long-term intubation. I took leave, and my husband and I walked him into the operating room together. He was eleven months old.

Bringing him home after the tracheostomy, I was thrilled to finally have him back with us — but a whole new set of challenges came with it. A trach patient needs round-the-clock care; a single piece of mucus caught wrong can be fatal. His immune system was weak, so colds and pneumonia kept sending him back to the hospital. Every ICU admission meant signing a critical-condition consent form — which really means, “we’ll do everything we can, but there’s no guarantee he comes home.”

The first time I signed one of those forms, I cried without stopping. By the fifth time, I’d gone numb. By now I’ve honestly lost count of how many I’ve signed. Once, my son went into shock and had to be defibrillated, and I wasn’t told until I came for evening visiting hours at 8pm — his face was so pale it looked like he was already leaving us. It broke something in me, thinking about everything he’d endured since birth, all the treatments, the cold and lonely hospital rooms — and still I couldn’t let him go.

He turned one in the ICU. He wore a tiger-god hat for the traditional first-birthday “grabbing” ritual, and watching his small hand fail to grasp anything at all, I could tell something was slipping. His father insisted it was just muscle weakness from being hospitalized so long. A mother’s instinct doesn’t lie — the doctor confirmed he really was declining. His symptoms looked like spinal muscular atrophy (SMA), the number-one genetic killer of children under two, but something didn’t quite fit, and a firm diagnosis stayed out of reach.

Eventually, we paid out of pocket — about NT$120,000 — for whole-genome sequencing. The results confirmed an ultra-rare disease: Spinal Muscular Atrophy with Respiratory Distress type 1, SMARD1. Fewer than 60 people in the world have it, and he is the only one in Taiwan. A one-in-a-billion chance, and it landed on us — both my husband and I happened to carry the recessive gene. It resembles ALS in some ways; there is no cure anywhere in the world, and he will need a ventilator for the rest of his life.

Looking at my son lying in that bed, I keep circling the same questions: “If we’d known from the start there was no cure, would we still have chosen the tracheostomy?” “If he’d left us before we ever got a diagnosis, I’d have carried that unanswered question forever.” “The babies who die of SIDS — did some of them have what my son has, their lungs suddenly collapsing in their sleep, unable to breathe?”

Life doesn’t let you take a decision back, so all you can do is keep walking forward — not dwelling on the past, not fixating on the future, just holding onto every minute we still get with our son right now.

Having a Child With a Rare Disease Is Private — My Mentor Taught Me How to Turn It Into Something for Others

Because my child is medically complex, and his condition is the kind that only ever gets harder, never easier, I understand other rare-disease parents’ pain on a level most people can’t. I keep coming back to one question: beyond chasing success, what else in life is actually worth pursuing?

Along this road I’ve had help from more people than I can count, and I’ve also learned that many support groups for medically complex families are private — invitation-only, accessible only through a referral from a nurse or another parent. So I’ve been working to pull everything I’ve learned into a book, hoping it can eventually help other families like mine.

When you’re facing the question of whether to put someone you love through a tracheostomy, the panic is overwhelming. Most families end up agreeing to it, because no doctor is going to ask you to give up on your own family. And there’s no way to know in advance how much life afterward will test you. Round-the-clock caregiving, the financial and emotional weight of long-term care — it will make you ask: “Is advanced medicine extending a life, or extending how long someone suffers?”

Through a series of coincidences, I became a mentee in the Chinese Leaders 100 program. My mentor had more than twenty years of experience in mobile internet and software, and was, at the time, chief product officer at an international software company. The first time we met, I told her my story and said I wanted to share my experience to help other medically complex families. She’d seen enough of life to read people clearly — she told me it had only been six months since the diagnosis, that my own adjustment period was probably still too short, and that going public with something this private wasn’t something to force. She told me not to push myself too hard.

Carrying the weight of both family and career, my mentor became something like a lighthouse, pointing me toward a direction for my life and my work: we have to take care of ourselves first, before we’re able to help other medically complex families, or lead a team at work.

Using Words to Carry Something That Comforts Every Hurting Family

Another mentor I found along the way is a well-known Taiwanese author. After taking his writing class, I tried putting these past two-plus years into words, and discovered writing is nothing like I imagined — compressing blood and pain into single sentences is its own kind of hard. But that class also taught me that words carry real weight, that they can move an idea from one person to another and actually help someone. I’m the only one who can write the words that comfort families like mine, because I am living this pain right now, even though the road ahead is still full of thorns with no end in sight.

I couldn’t give my son a healthy life. But he is still an essential part of our family. Coming to a place of acceptance took an enormous amount of self-healing — and I want to put that same energy into healing other hurting families through what I write.

I’m grateful to the Chinese Leaders 100 mentorship program for teaching me how to give, instead of staying stuck in my own pain. I’ve come to understand that success isn’t the only thing worth chasing in life — maybe that’s the gift hidden inside being “the mother of a rare-disease child.”