Old Joe lights up for Mito

Old Joe is also being lit up in memory of Kit Baddeley, a little boy who passed away from mitochondrial disease aged just 14-months-old in 2024.

Kit’s mum, Gemma, is a Birmingham alumna (BSc Biological Sciences, 2005; MBChB Medicine, 2013); his grandmother, Julie, and great grandmother, Pat, are also Birmingham graduates, having graduated with Biological Sciences and Mathematics degrees respectively.

Kit was a seemingly well 12-month-old who became poorly with vomiting and drowsiness just two days after celebrating his first birthday. On admission to hospital he was found to be in liver failure and was transferred to Birmingham Children’s Hospital where he spent three weeks. His liver improved but he had become weaker with other neurological signs developing during his admission.

Two days after being discharged home, his family were called into a meeting to be told that he had POLG-related mitochondrial disease (Alper’s Disease in his case), that no treatments were available and that he was being referred to palliative care. Kit passed away peacefully at home with his family on 15 September 2024, exactly two months after first becoming unwell. Kit’s family describe him as gorgeous, happy, loving and brave. He absolutely adored people as well as bees and giraffes.

Gemma is now involved with mitochondrial disease charity, the Lily Foundation, which is one of the partners – along with the University of Birmingham – in a major new research consortium set up to study this complex family of genetic disorders.

Led by the University of Cambridge, the MRC Centre of Research Excellence in Mitochondrial Genome Therapeutics will bring together leading experts to investigate how mutations in mitochondrial DNA cause disease and translate that knowledge into new therapies.

Commenting on the launch of the new Centre, Daniel Tennant, Professor of Biochemistry at the University of Birmingham, said: ‘The significant impact families affected by mitochondrial disease face demonstrates the need for more research in this area…The University of Birmingham brings unique models of mitochondrial disease, expertise in mitochondrial biology and world-leading metabolic analysis platforms to this exciting and innovative research programme. Together, we form a collaborative enterprise that we hope will bring much-needed treatments to patients and their families.’

The Lily Foundation’s involvement in the partnership will provide an important link, ensuring that the priorities of families with lived experience have the opportunity to shape the research.

Since losing Kit, his family and their friends have raised over £75,000 for The Lily Foundation and The Noah Jordan Foundation, a paediatric mitochondrial charity of which Gemma has become an ambassador. They remain determined to raise awareness and funds and to support others affected by these terrible diseases.

More information about mitochondrial disease can be found on the Lily Foundation website.