A Different Story was established in 2022 and is born out of our experience as 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, our experience in this journey is the foundation and life of A Different Story.

We’ve seen how easily extraordinary children, like our son, are disadvantaged and marginalized because they just don’t ‘fit’ into one of the prescribed boxes. We’ve also learned about the importance of parents in similar positions having the support, community and information they need to navigate an, often, bureaucratic system and make vital decisions about the health, education and care for their children.

With this knowledge and the expertise of many others, we are working to improve the quality of life of children living with rare conditions or intensive care needs and their families in the Netherlands.

A Different Story is also about telling a different kind of story than that initial diagnosis once told us. Stories that are rooted in celebrating other extraordinary and rare children for who they are and what they bring to this world – and not in spite of their difference, but because of it.