Privacy in the Sunlight: Why I Won't Tell Any Family What to Choose

As the family member of a rare-disease patient, I have never once used that identity to ask for special treatment at work. In my first year at a new company, I was still pulling more than 80 hours a week — and I can only credit that to the support system behind me: my husband’s family, my husband, and my own parents all backing me up, which is what let me push hard at work and actually deliver.

My reason for starting the blog “One in a Billion: A Rare Disease” was to help families in a similar, closed-off situation find the medical resources and support networks they need. My mother was always strongly against me writing about our situation publicly — she worried that someday, someone with bad intentions would use it against me.

She turned out to be right. One day, the attack she’d warned me about actually happened… (details omitted — roughly a thousand words worth). The short version: my private life became gossip, twisted into things that weren’t true. When I found out, I was shocked — that someone else’s pain could bring another person that much “joy” — and honestly, speechless. But this was my choice to begin with. Other people can choose to be unkind; I can choose to keep doing what I set out to do.

Has Running This Page Actually Done What I Set Out to Do?

Over the past three years, roughly four or five families dealing with a rare disease have reached out to me privately. Most of them contact me early — within the first year after their child’s diagnosis — still full of doubt and uncertainty as parents. The questions are usually some version of: “Should we go with a tracheostomy for him? Or keep him intubated, knowing that means a much higher risk of infection and death?” or “Why did fate choose us?”

There was a time I thought I could give families more options — steer them away from a tracheostomy, spare both patient and family the toll of long-term care. But when one mother asked me point-blank whether she should go ahead with the surgery for her child, I froze. Because — what right do any of us have to decide life or death for someone else?

I still remember a doctor friend who, after glancing at a brain scan online, declared with total confidence that my son had cerebral palsy. (I don’t even blame him for getting it wrong — cases like ours are simply too rare for most doctors to have seen.) Without a rigorous exam, without understanding someone’s life or circumstances, isn’t it more than a little arrogant to tell another family not to go ahead with a tracheostomy for their child? Even with no cure, even with a punishing road of long-term care ahead, there is still a version of happiness available to those willing to carry it. The only real difficulty is that most infants can’t speak for themselves — so it falls to their parents to decide whether their life continues or ends.

So instead, what I do is connect families who reach out to respiratory-care support groups, where other mothers can share what it’s actually like to care for a child with a tracheostomy. I let each family judge for themselves whether they have the resources (to hire a caregiver), the time (round-the-clock care), and the resolve to walk the long road of long-term care and rehab. I’ve walked that same road myself, so I know how much this kind of support and company actually matters.

Taiwan’s Infant Mortality Rate Is 4.5 per 1,000 — Higher Than Japan’s 2.5 or South Korea’s 3.2

Taiwan’s premier said late last year that the country’s infant mortality rate far exceeds the OECD average of 1.9 per 1,000 — “genuinely something to be ashamed of, and it shouldn’t be this way” — and the government has approved a plan to improve pediatric care, committing NT$2.8 billion over ten years to raise care quality and lower mortality. But as I wrote when I first started this page — a share of SIDS cases, the second-leading cause of infant death, may actually trace back to rare diseases like SMARD1. If a disease like this triggers during sleep and the lungs collapse, an infant can stop breathing and die without warning. And a baby who has already died can’t be given a genetic test to find out why.

So if you know a family who has lost a child to SIDS, maybe you can point them toward “One in a Billion: A Rare Disease” — so they know that losing a baby to SIDS was never a failure of their care. I’m also in the early stages of planning a charitable project, hoping to bring a little more sunlight to children living with rare diseases.

Privacy laid out in the harsh light of day — a big tree always casts a shadow. I’m not afraid of the shadow. I just hope this tree can offer a little shade to other families in the same situation.