A charitable trust set up by a University employee in memory of her baby son is celebrating reaching a milestone.

Bekki Burns, a research secretary in the Department of Electrical and Electronic Engineering, set up The Campbell Burns Metabolic Trust with husband Mark after their son Campbell was diagnosed with the rare metabolic disorder Leigh’s Disease at just nine weeks old.

Sadly, Campbell passed away just eight months later in September 2012 but the charitable trust set up by his parents has continued to act as a remarkable legacy dedicated to helping the families of other children diagnosed with metabolic disorders.

The Trust has now raised around £32,000 and recently awarded its 50th grant.

Bekki said: “This is far beyond anything I expected when we set up the Trust and it gives us the motivation to keep going and keep growing as a charity. It is so rewarding to know that we are making a difference – our next goal is to hit the 100 grants mark by Christmas.

“The name of the Trust is also becoming well known among many of the specialist metabolic clinics at hospitals around the country and we are starting to see more and more families being referred to us by staff working in the NHS which is brilliant.”

The Campbell Burns Metabolic Trust offers families four types of grants. The Experience grants offers up to £100 to use towards a day out to build happy memories with their family, while the Essentials helps struggling families to cover the costs associated with their child’s illness — such as transport and accommodation for hospital visits or helping with household bills while parents are unable to work. Many children with metabolic disorders also have special dietary requirements and the Trust’s Food Preparation grant helps to pay for items including breadmakers and blenders. A final Emergency grant offers families financial assistance with a range of urgent needs.

The money to pay for the events has come fundraising ventures including cake sales, fun runs, craft fairs and a charity golf day in Cheltenham that brought in around £2,500.

A team from the University’s Faculty of Engineering Research Office, including Jane England, Richard Adams, Dr Richard Tew, Matt Neville and Rob Thomas, raised £1,300 by undertaking the Yorkshire Three Peak Challenge, which saw them climb Pen-y-ghent, Whernside and Ingleborough in under 12 hours.

More information about the Campbell Burns Metabolic Trust − including how to donate − is available at
www.campbellstrust.co.uk

Bekki has written a blog since Campbell’s diagnosis:

http://campbellburns.wordpress.com