Gone too Soon

Start the conversation.

In sponsorship with

30% of children diagnosed with a rare disease die before their 5th birthday. In conversations with families affected by rare disease, all too many have lost loved ones. ‘Gone too Soon’ captures the honest experience of loss, grief and life after bereavement, allowing space for affected families to share their narrative and help raise awareness of this all to common experience.

Aim

‘Gone too Soon’ was designed to start the conversation about child bereavement due to rare disease and highlight the need for more support for families. Affected families feel isolated and often their loved ones simply do not know what to do or say to support them. Sometimes, all they need is to simply know someone is there allowing the space and time to talk about their child as and when they need to.

Process

Seven families were invited to participate in the shooting of this series - the interviews of which formed the narrative for each photograph and the content for the touring exhibition. Alongside short films, the exhibition consisted of 3D busts rendered from participants photographs of their children allowing a temporal reconnection and expression of loss. Small items belonging to the children were also displayed.

Impact

‘Gone too Soon’ formed part of a suite of exhibitions over a three year period known as ‘Rare Aware’, designed to raise awareness of rare disease and it's impact upon affected families. This succession of exhibitions was on show for nearly 1 in every 3 days, being seen physically by 17,000 attendants at our 82 exhibitions, and attained a readership of over 48 million people through some of the UK’s biggest press platforms and social media outlets.

During this period, over 15,000 organisations viewed our work. Collating the feedback, we know that ‘Beauty of Rare’ helped change perspectives on rare disease, increased empathy, understanding and brought the realities of this community to the forefront of our audiences attention.