Campbell Burns, the baby son of University research secretary Bekki Burns, has sadly lost his fight against the rare metabolic disorder Leigh’s Disease.

Campbell, whose story we featured in Exchange in September, was diagnosed with the condition at just nine weeks old and his parents Bekki and Mark were told it was unlikely he would live until his first birthday.

Despite continuing to defy the doctors by making remarkable progress, Campbell was taken ill suddenly on the afternoon of Friday 28 September and died in hospital later that evening.

Bekki, who works in the School of Electrical and Electronic Engineering, said: “Campbell was only in our lives for eight months, but had a huge impact — we were lucky to have been his parents, and will hold our little boy in our hearts forever.”

Bekki and Mark have two other children, five-year-old Daniel and three-year-old Holly, who are not affected by the condition.

Bekki added: “The support of family and friends in recent months has been invaluable, and we are grateful to everyone who contacted us to ask how we were doing, and to send their condolences.

“What is certain is that Campbell has left an incredible legacy in his charity. We can’t wait to start helping other families in his name.

“The Campbell Burns Metabolic Trust will grow from strength to strength and will be there to support families like ours.”

Friends and family gathered to say goodbye to the eight-month-old on Friday 5 October at Loughborough Crematorium.

Shortly after learning of Campbell’s diagnosis his family established the Campbell Burns Metabolic Trust, which aims to raise money to support other families affected by these devastating conditions.

More information about the Campbell Burns Metabolic Trust is available at: www.campbellstrust.co.uk. Donations can be made via: www.justgiving.com/thecampbellburnsmetabolictrust. Applications for help from the Trust will

Alternatively text CBMT01 £1 (or whatever figure you would like to donate) to 70070. And you can follow the charity on Twitter: @CampbellsTrust and on Facebook at: www.facebook.com/TheCampbellBurnsMetabolicTrust.