Help Us Change the Narrative: Compatible With Life

Behind every diagnosis is a person. Behind every statistic is a family. Help SOFT UK bring their stories to life.

At SOFT UK, we know the power of stories. They can challenge assumptions, build understanding and help people see beyond a diagnosis.

In 2027, we are embarking on an ambitious new campaign to capture and share the real-life experiences of families affected by Trisomy 13 (Patau’s syndrome) and Trisomy 18 (Edwards’ syndrome).

We need your help to make it happen.

Why Compatible With Life?

The phrase “incompatible with life” is one that many families hear when receiving a diagnosis of Trisomy 13 or Trisomy 18. These words can have a profound and lasting impact, shaping how parents understand their child’s condition and what they believe the future might hold.

We recognise the serious medical challenges associated with these conditions, and we believe families deserve honest, compassionate and accurate information.

But a diagnosis cannot tell the whole story.

It cannot fully capture a child’s individuality, the experiences a family will have, the milestones they may celebrate, the challenges they will navigate or the memories they will treasure.

Our Compatible With Life campaign aims to open up a conversation about the language used around these diagnoses and the importance of listening to the families who live with them.

By crossing out the “IN” in “INCOMPATIBLE WITH LIFE”, we want to encourage people to pause, reflect and look beyond the words.

This is not about blaming healthcare professionals or dismissing the realities of these conditions. It is about bringing lived experience into the conversation alongside medical knowledge, helping build understanding and supporting more thoughtful, individualised communication.

Bringing real stories to life

Throughout 2027, our Charity Director, Shaun Dowdall, will be working alongside Liam Nicoll, our volunteer videographer, to visit families across the UK and document their experiences.

We will be filming documentary-style stories in families’ own homes and communities, creating a space for them to share their experiences in their own words.

We want to capture the real lives behind the diagnosis: the everyday moments, the challenges, the joy, the uncertainty, the memories and the experiences that statistics alone cannot show.

We hope to include a range of family experiences, reflecting the diversity of journeys connected to Trisomy 13 and Trisomy 18.

The project will include:

- Individual family documentaries sharing personal experiences and perspectives.

- A combined campaign film bringing multiple family voices together.

- A recorded family round-table discussion, giving families an opportunity to reflect on their experiences and what they hope others will learn.

- Short educational videos and social media content to help the stories reach wider audiences.

- Resources for healthcare professionals, using lived experience to support education, reflection and discussion.

What will your donation help fund?

Shaun and Liam will undertake the filming themselves, helping us keep production costs as low as possible. However, bringing this project to life will still involve costs.

Your donation will help fund:

- Travel to meet families across the UK.

- Accommodation and essential expenses where needed.

- Editing and post-production of the films.

- Captions and accessibility features.

- Campaign materials and supporting resources.

- Sharing and promoting the finished stories so they reach healthcare professionals, families and the wider public.

Every donation, whatever its size, will help us take another step towards making this project possible.