Raising awareness of mitochondrial disease is vital for those living with the condition and is something we strive to do as part of our patient-focused approach to research within the Wellcome Centre for Mitochondrial Research (WCMR) at Newcastle University. This awareness has been given a massive boost following the announcement that Coronation Street, one of the UK’s most watched soap operas which regularly draws in over 5 million viewers, is featuring a storyline about a child who is diagnosed with mitochondrial disease.
The story will run over several episodes of the ITV soap throughout the summer and will involve a three-year old boy (Oliver) who becomes unwell and suffers multiple seizures. As the seizures continue, doctors fear that he could have a more serious underlying condition and his parents are devastated when he is diagnosed with mitochondrial disease. In the months that follow, they are forced to come to terms with the heart-breaking diagnosis which leaves Oliver with a life limiting illness for which there is currently no cure.
The production team for the soap were determined to get the story line medically correct and contacted Prof Bobby McFarland over 9 months ago to ask for advice. As an internationally renowned expert in paediatric mitochondrial disease, Bobby has since been heavily involved in the development of the script and has been consulted on a weekly basis by the Coronation Street research team to ensure accuracy.
Professor McFarland said: “At a time when the health of our nation has never been more in focus and when conveying simple health messages have proved so challenging, it is a testament to the acting, writing and directing skills of the Coronation Street team that they have taken on the challenge of such an emotionally, medically and ethically complex issue as mitochondrial disease. The attention that this focus brings on rare, inherited and life-limiting conditions is not only welcome, but vital, if we are to succeed in supporting individuals and their families and to find effective treatments. The mitochondrial team at the Wellcome Centre for Mitochondrial Research at Newcastle University have been delighted to help with the development of this storyline.”
Coronation Street’s research team also worked closely with our charity partner, The Lily Foundation, to ensure the storyline closely reflects the experiences of families with children affected by mitochondrial disease.
Liz Curtis, CEO and co-founder of The Lily Foundation said: “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 diseases, 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 soap operas is truly momentous news.
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.”
The emotional storyline will highlight the challenges faced by many families in the UK, and around the world, who have been devastated by a diagnosis of mitochondrial disease. It is hoped that raising awareness in this way will help improve the lives of those living with the condition.
The WCMR have provided contact details for anyone who would like further information on mitochondrial disease and The Lily Foundation are able to provide support to anyone in the UK who has been affected by the condition. To find out more: https://www.thelilyfoundation.org.uk/find-support/need-someone-to-talk-to/