ITV's decision to run a major storyline about mitochondrial disease on Coronation Street, one of the UK's most popular soaps, represents a momentous step forward in raising awareness about mitochondrial disease and the impact it has on families.
Our charity has worked closely with ITV to ensure the script reflects the experiences of real families affected by mitochondrial diseases. The script was reviewed by Lily staff including CEO Liz Curtis and Prof Bobby McFarland from the Wellcome Centre for Mitochondrial Research, a member of our Medical Board. Families who are supported by The Lily Foundation were also consulted.
The storyline involves the characters Leanne Battersby (Jane Danson) and Steve McDonald (Simon Gregson), and their three-year-old son Oliver (played by twins Emmanuel and Jeremiah Cheetham). Oliver suffers seizures which are first put down to a febrile convulsion, but when the seizures worsen doctors start to fear it could be something more serious. Viewers have watched Leanne and Steve struggle to come to terms with the devastating mitochondrial disease diagnosis, which leaves Oliver with a life-limiting illness that currently has no cure.
The emotional storyline highlights the plight of hundreds of families in the UK, and many more around the world, whose worlds have been turned upside down by mitochondrial disease.
Commenting on her role as Leanne, actor Jane Danson said: “We’ve worked closely with Liz Curtis at The Lily Foundation. It was harrowing hearing the story of what happened to her daughter Lily but also really amazing to hear how people come through this, how they support each other and learn to live again. It’s almost too much to comprehend but I came away from the meeting bowled over by her bravery and how amazing she is as a human being. She shared with me how she felt emotionally, how she got through her days, how people rallied around her. I’ve also read a lot of literature about how families cope around their children’s diagnosis with life limiting illnesses, looking at the human elements to their stories amidst all the medical speak and hoping I can get it right. It is quite overwhelming, I’ve been so lucky to have so many stories with Leanne over the last 20 odd years but this one feels different, this one could really break her and it feels like it’s the one where I’ve got the most responsibility to get it right.”
Above all, we wanted to do justice to the stories of the many thousands of families who have to deal with diagnoses similar to Oliver’s, be it a mitochondrial disorder or another life-limiting condition."
Liz Curtis, CEO and co-founder of The Lily Foundation, commented: “All of us at The Lily Foundation are excited to be working with Coronation Street on a storyline about a child with a mitochondrial disorder, and grateful to the show for highlighting an issue that affects hundreds of families in the UK. For everyone who has worked hard for years to raise awareness about mitochondrial disease, in particular for families living with a diagnosis and those who have lost a child, having their story told on one of the nation's most popular soaps is truly momentous. There is currently no cure for mitochondrial diseases, so those diagnosed face an uncertain future. We have been impressed with how sensitively the show's researchers and script writers have handled this, listening to those who have been affected by the disease and the doctors who support them. We see this as a very positive step in our ongoing fight to raise awareness about mitochondrial diseases, support affected families and fund research to find a cure.”
Of his decision to tackle this difficult storyline, the show's producer Iain MacLeod said: “This is a story about a family coming to terms with the most difficult news anyone can face and the ways in which this strengthens and shatters relationships in unpredictable ways. Above all, we wanted to do justice to the stories of the many thousands of families who have to deal with diagnoses similar to Oliver’s, be it a mitochondrial disorder or another life-limiting condition. It is something that, as a society, we find difficult to talk about but which is all too common. The taboo around these illnesses can mean awareness is low, which means funding for research is low. Aside from telling a brilliant, moving and emotionally complex story, we really hope to draw attention to this subject to change this situation for the better.”
How you can help
If you've been moved by watching Oliver's story on Coronation Street and would like to make a difference, the best way to do this is by donating to The Lily Foundation. Please donate to our Mito Is On My Street campaign today.
Text MITO to 70450 to donate £3
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Do you need support?
If you've been personally affected by a mitochondrial disease and would like support, call The Lily Foundation on 0300 400 0201 to speak to a staff member privately, or email [email protected].