How a holiday greeting, a broken dishwasher, and a mother's fear became Next of Kin.

A holiday greeting

In late 2016, I moved into a building in Brooklyn Heights. I was living alone and didn't know anyone, so I handwrote a holiday card for every apartment — just the apartment number, since I didn't know a single name — and invited everyone to join a Facebook group I'd set up for the building. People started joining, and slowly we all began getting to know each other.

That's how I met Evelyn and Ben.

Evelyn and Ben

Evelyn and Ben had lived in the building for decades — since the 1960s, long before I arrived. Evelyn had seen people come and go for years. Ben was about 30 when I met him, and he was clearly disabled in some way I didn't yet understand.

Evelyn explained to me that Ben has something called Smith-Magenis syndrome — a diagnosis that wasn't reached until he was already an adult. He also has other challenges: he's legally blind, and his communication can be hard to follow if you don't know him. Evelyn had given up a career in publishing to raise him on her own, as a single mother, for his entire life.

Over the years we got to know each other well. We'd go on days out together. We'd have cups of tea. They'd come and visit. I'd look after Ben sometimes — and if I needed to take my dishwasher apart and put it back together, that was exactly the kind of thing Ben loved to help with, so I'd invite Evelyn to drop him off and we'd work on it together. We'd play games. We'd go out to eat.

Ben is an incredibly wonderful person to spend time with. But it takes a while to get to know him, and when you do, he never ceases to surprise you with the depth of his personality. His personality is mediated through a visibly disabled demeanour. His speech isn't always easy to understand. His grammar can be confusing — he says "you" when he means "I," so when he says "you did it!" he's actually saying "hooray for me, I did it!" His emotions are very strong. He loves his mum intensely. He fantasises about doing things without her, and it's very sweet — sometimes he'll get a carer to take him to a museum, and he'll come back absolutely buzzing.

He notices things other people miss. A crack in a window. A blocked staircase. A piece of litter on the sidewalk. He sees the world up close. He would rather give any help he can to help you fix a bathroom door than eat supper — he's not always able to do the task himself, but he wants to be included, he wants to be useful, and he won't let you forget a step. The number one thing about Ben — the thing that drives everything — is his connection to people. That's what matters to him more than anything else. And that's the thing no assessment has ever asked about.

What I started to see

As Evelyn and I became closer friends, she was able to share more and more about what it was really like to be Ben's mother. The sacrifices she'd made. The challenges she'd overcome. The things that were still raw and on the surface, even after all these years.

The biggest thing — the thing that came through above everything else — was fear. Not of anything happening to her, but of what happens to Ben when she's gone. She told me once that every parent of a disabled child is haunted by the same question. She's not unique in that, she said. It's something that's a lot more common than people realise.

I started to see how little relief Evelyn got. Caring for Ben wasn't just a full-time job — it was her entire life. I got a glimpse of the days out he'd have with carers, and how much effort it took to find the right people, and how often they'd move on. Every new carer had to start from zero. Every time, the same explanations. Every time, the risk that they wouldn't get it — that they'd misread his behaviour, misunderstand his words, underestimate who he is.

And I started to understand something about the system around them. It had been overly bureaucratised, beset with paperwork and metrics and diagnoses. In that system, the humanity of the people being served was often the last consideration. Ben would be treated with a broad brush based on his diagnosis or his presented behaviour, rather than who he really is inside. Evelyn told me about an assessment that took two hours and never once asked who Ben is as a person. She told me about educational goals that hadn't changed since kindergarten — and Ben is 38.

The carers in the system are often wonderful, well-meaning people. But the incentives the care system operates under are not always aligned with what families actually need. There are good stories — places where it works beautifully. But the pattern I was starting to notice through Evelyn's testimony was a system that left a lot unsaid and undone and uncaptured. It seemed able to capture metrics and diagnoses and testing and medicine, huge mountains of bureaucracy, but in doing so it somehow left the people behind in a lot of key areas — both the carer and the cared for.

The thing that will be lost

The thing that terrifies Evelyn — and every parent in her position — is that all those years of accumulated knowledge and instinct about how to look after their child will be gone when they are gone. Who's going to read Ben's journals? Who's going to know that "the real Ryan" means he wants to be physically in the same room with you? Who's going to know that when he puts his hands up by his head and looks down closely at something, that's joy?

Evelyn knows these things because she's spent 38 years learning them. A medical file will never contain them. A care plan won't mention them. And when Evelyn loses capacity — or when she dies — all of that knowledge dies with her, unless someone captures it.

A lightning bolt

In early 2026, I was working with AI technology in my day job and realising how dramatically the world was about to change. I was building personalised tools for people — small, specific, useful things that would have taken months and thousands of dollars just a year before. And one evening, thinking about Evelyn and Ben, it hit me.

What if we could take everything Evelyn knows — the journals, the stories, the instincts, the decades of knowledge about who Ben is — and make it queryable? A whisper from the person who knew him best, available to every carer who follows.

I registered nextofkin.ai that night.

What we're building

Next of Kin is a tool that preserves what only a parent knows about their child — and makes it available to every carer who follows. A caregiver writes journals, records voice notes, sits for structured interviews with trained professionals. All of it feeds a knowledge system that a carer can query in plain language: "It's raining and I have two hours with Ben. What would he enjoy?" The answer comes from what the caregiver actually said, always cited, always specific.

It started with Evelyn and Ben. We're building the prototype with their story, their journals, their decades of lived experience. If it works for them — if a carer can sit down, ask a question, and get an answer that genuinely helps them understand Ben — then it can work for other families too.

We don't know yet if it will be everything we hope. We're building it brick by brick, testing as we go, staying honest about what works and what doesn't. But the problem is real, the need is urgent, and the technology to help may finally be here.

This is for Ben. And for everyone like him.

Ben is a founding part of this project. If Next of Kin becomes a business that generates revenue, Ben will receive royalties through his special needs trust, because he is as much a creator of this as anyone.

But more than that, this is about making sure that when the person who knows you best is no longer there, something of what they knew survives. Enough that the next person doesn't start from zero.

Enough that they can care a little more like she did.