When Liz Curtis's daughter Lily was seven weeks old, something was not right.

She struggled to gain weight and had seizures where she stopped breathing. Liz and her husband were told Lily had a mitochondrial disease, that there was no cure and no treatment, and that she was unlikely to survive. Lily lived for another six months at home with her family.

Liz went looking for information and other families, and found almost nothing written for parents.

In October 2007, six months after Lily died, she set up the Lily Foundation. Nearly 19 years later, the charity has raised millions of pounds for research and supported more than 1,500 families, and it has helped drive advances in genetic diagnosis.

In this conversation, Liz talks about what it is like to live with a child with a life-limiting condition, how mitochondrial disease is passed on, the difficult question of whether to test, the community she has built, and the charity's plans for a UK Mitochondrial Disease Research Institute.

Chapters

00:00 Introduction

02:36 Lily's illness and diagnosis

05:01 Taking Lily home

06:46 Setting up the charity

09:28 Funding genetic testing, and how the NHS took it on

10:35 The London Marathon and the first families

13:15 Living with the waiting

14:40 Making sure everyone met Lily

16:20 What is mitochondrial disease?

18:01 How it is inherited

21:51 Should you test?

25:17 The community: online groups, weekends and coffee mornings

27:51 Why the charity paused its research call

29:28 The Mitochondrial Disease Research Institute

34:36 Building the foundations

35:39 How to get involved

36:53 The Lily Family

About Liz Curtis

Liz Curtis MBE, is the founder and CEO of the Lily Foundation, a UK charity dedicated to fighting mitochondrial disease. She founded it in 2007 after losing her daughter Lily, with the aim of funding research, improving understanding of the condition, and supporting affected families.

If you or your family have been affected by mitochondrial disease, you are not alone. Find out more about the Lily Foundation here:https://www.thelilyfoundation.org.uk/.

This episode includes a discussion of the loss of a child.

This episode is for general information and is not a substitute for medical advice. If you have concerns about your health or your child's health, please speak to your GP or specialist team.

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