Heidi's story: living with aHUS

Heidi was diagnosed with a rare kidney condition at just three weeks old. She has blood infusions to keep her alive, but nothing stops her – her life is filled with family, friends and sports she loves.

People don't realise what she goes through on a daily basis... it has a massive impact.

On her ninth birthday, we met Heidi and her mum Cara at the Royal Belfast Hospital for Sick Children in Belfast, Northern Ireland.

Heidi lives with a rare kidney condition, Atypical Haemolytic Uraemic Syndrome (aHUS).

When she was four weeks old, Heidi's family were told that she was extensively brain damaged. She was cared for by consultant Dr O'Connor, who Heidi's family credit for saving her life. Today, Heidi loves sport and, as her mum says, "nothing stops her".

aHUS support

New interactive storybook for children with aHUS

The interactive storybook Revealing the Secrets of aHUS puts young children at the centre of the story as they explore and learn about Atypical Haemolytic Uraemic Syndrome (aHUS).
Revealing the Secrets of aHUS storybook