Raising Children With Rare Diseases

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A Different Story was born out of our experience of parents to a little boy living with a rare neurological disease. From obtaining a diagnosis to finding quality care to fighting for accessible education and to building a supportive community, their experience in this journey is the foundation of A Different Story.

Together in conversation with Sarah LaPham, director of A Different Story in Amsterdam, is Nina Aziz Justin, another mother from the same community, whose story holds an almost uncanny connection. The two first met in a global Facebook group for families navigating rare conditions only to later discover they live in the same neighbourhood in Amsterdam, with children the same age.

What unfolds is a conversation about what often remains invisible: the quiet isolation that can come with raising a child whose needs don’t fit into familiar categories. The subtle, often unspoken shame that can arise not from the child themselves, but from a world that doesn’t always know how to meet differences with understanding. And the concept of “living loss” — the ongoing experience of holding deep love and deep grief at the same time, every single day.

At the heart of it all is one clear thread: what changes when people are truly seen. Not fixed. Not pitied. But met in a real community.

Through A Different Story, that kind of space has been growing in Amsterdam since 2022 — centering care intensity rather than diagnosis. Monthly in-person gatherings with childcare, online meetups, and spaces where children aged 8–16 can simply be children, while parents are given something many of them rarely experience: a breath.

Sarah also makes an important call for what needs to follow — more awareness, more curiosity, more empathy, and yes, more funding, so that this kind of support stops being the exception and becomes part of how we care for one another.

There is something very humbling about seeing how a community can form like this. And then watching it grow into something that now reaches across cities and countries, holding people who might otherwise never find each other.

Small moments of recognition.

Someone saying: me too. I get it.

After you listened, we have a feeling you will never look at community building the same way again.