Next of Kin captures what only a parent knows — and makes it available to every carer who follows.
We are building an easy-to-use app for families, carers and the people they care for. Register your email on our waitlist and we'll keep you updated on our progress. If this resonates, please share your story with us.
Care systems are built around assessments, paperwork, and eligibility. They ask what support is needed. They rarely ask who this person is. The knowledge that shapes every good care relationship — the habits, the fears, the preferences, the history — lives in the head of the caregiver. And when that caregiver is gone, it goes too.
“He says 'you' when he means 'I'. He's done it his whole life and it took me three years to understand. New carers never know. So they respond to the wrong person.”
— Smith-Magenis syndrome mother“The assessment was two hours. They asked about communication, mobility, personal care. They never asked what he loves. They never asked what frightens him. They never asked what makes a Tuesday good.”
— Smith-Magenis syndrome mother“I am haunted by the same question every parent in this situation has. Not who will care for him. There are services. But who will know him?”
— Smith-Magenis syndrome motherWe interview you. Not a form — a conversation. We ask about routines, preferences, fears, joys, history. We ask the questions carers will one day need answered.
Your answers become a living record — structured, searchable, and written in your voice. It grows over time as your child's life changes.
A carer asks a question. The answer comes informed by what you have shared — cited, specific, in your voice. Not a prescription but not a guess either. A caring suggestion.
Here's what a carer might ask — and what Next of Kin might say back.
“Ben's been quiet all morning and won't eat his lunch. I don't know what's wrong.”
Ben sometimes withdraws when something has changed in his routine that he hasn't been able to name. His mother noted that he processes disruption slowly — sometimes taking until the following day to show it. She also mentioned that fixing or making things is often how he re-regulates. If you have anything that needs mending, now might be a good time to ask for his help.
Based on interview notes: “Routine disruption”, “Self-regulation strategies”, “Ben and fixing things” — recorded by his mother, March 2024.
“Their diagnosis is not their personality.”
Conversations with caregivers, carers, and professionals about what it means to know someone who cannot always speak for themselves.
In this first episode, we speak with a mother about the moment she realised that the most important things she knew about her son had nowhere to go.
Help them care like you did.
Join the waitlist to get early access, share what matters most about your child, and help us get this right.
No data ever shared or sold. No spam. Just newsletter updates on something that matters.