The most important thing I’ve ever built

I’ve sat in so many windowless exam rooms, reviewing my daughter Anni’s health history and holding back tears.

I remember one particularly hard day with a neurology intern. She wasn’t unkind, but with every question I got more choked up. I described how the neurological damage was taking her ability to talk and eat and run. How many seizures she’d had in the previous weeks. How her limbs were starting to twist. By the end of the intake, I could hardly speak. As soon as she left the room, I sobbed. I wondered if she’d noticed my face, or heard what was happening in my voice.

It’s been 15 years since Anni’s diagnosis with Sanfilippo syndrome, and nearly 4 since she died. I think about those early days of terror. The long stretches of wondering when I’d last hear her speak, or when she’d be back in the ICU. The first time I ended up in the ER with what turned out to be the first of many panic attacks.

For fourteen years, I sat across from specialist after specialist. They asked about her seizures, her sleep, her medications. Almost no one asked how I was doing.

It wasn’t just me

I’ve learned a lot about caregiver mental health since then, both personally (“How do I hold all this grief and stress and overwhelm?”) and academically. We know chronic caregiving stress gets into the body. It shapes immune function and long-term health, and a parent’s wellbeing shapes their child’s care.

For my honors thesis at Portland State University, I surveyed 58 parents and caregivers of medically complex children. Half of them were never offered any mental health support by their child’s medical team. Not at diagnosis, not in the years after, not in bereavement. And every single person reported at least one significant mental health symptom since their child’s diagnosis. Not one checked “none.”

These parents make the hardest decisions of their lives, hear terrible news over and over for years, and provide skilled medical care at home. Then they’re left to carry the psychological weight of it alone.

What would have helped

I don’t expect clinicians to offer a full therapy session. They have a job to do, often with back-to-back patients, and their focus is rightly on the child. Many of them want to offer more and are carrying their own grief and burnout. But on that terrible day, a small shift in attunement would have made a real difference to me.

What would have made an even bigger difference was being handed the name of a therapist trained to work with parents of medically complex kids. Even better: not having to worry about paying for it. Best of all: a warm handoff on the day my daughter was diagnosed.

A couple of years ago, I had an idea. What if mental health care for parents and caregivers of children with serious, rare, and life-limiting diagnoses were built into the care model from day one, and stayed for the long haul? What if parents never had to figure out whether insurance would cover it, and never saw a bill?

The “What if?” turned into “Why not?” And then eventually: “Why not me?”

Introducing Nembry

In 2026, I founded Nembry, a nonprofit that will provide free mental health care to parents and caregivers of children with serious, rare, and life-limiting diagnoses.

My goal is simple: when a parent is handed a diagnosis, they’re also handed Nembry.

This kind of caregiving is long. There are check-ins during hospital stays, after a major medical scare, or when a child dies. But in the long days in between, parents often feel forgotten, burned out, anxious, and lonely. Nembry will be there from the day of diagnosis, through the long middle, and into bereavement if it comes. Care will come from licensed clinicians who are specially trained for this work and well supported themselves, because the people holding families need holding too.

I’m under no illusion that this is a quick build. Nembry is incorporated, and we have a founding board of people who know this world from the inside. 2027 is about building it right: filing the paperwork, setting up systems so care is never interrupted, and planning so our therapists are well taken care of before we see a single parent.

Let’s build this together

Many organizations and individuals are already doing beautiful work in this space. I’m not trying to replace any of it. I want to work alongside it.

If you’re one of them, a therapist drawn to this work, or someone inside a hospital system who sees this gap too, I’d love to connect. And if you want to follow along as Nembry grows, you can join the Nembry email list here: Nembry Sign-Up link

If you know a parent who’s carrying this, or someone who works alongside them, please pass this on.