February 24, 2016, by Emma Thorne
Major milestone for metabolic disorder charity
A charity established by a University of Nottingham research secretary after her baby son was diagnosed with a rare metabolic disease has recently awarded its 500th grant to families in need.
Bekki Burns’ baby son Campbell was nine weeks old when his doctors delivered the devastating news that he was suffering with the terminal condition Leigh’s Disease and would be unlikely to live beyond his first birthday. Tragically, he died just six months later.
His family were left shattered by the news but Bekki and husband Mark quickly decided they wanted to create a legacy for Campbell that would allow his name to live on while helping others affected by metabolic disease.
The Campbell Burns Metabolic Trust was born and less than four years later the trust is now celebrating this major milestone, having offered families support to the tune of a staggering £50,000.
Bekki, who works in the Department of Electrical and Electronic Engineering, said: “We were so pleased to be able to do it – the trust has grown rapidly since its inception in 2012 and now lots of families and metabolic units know about us and need our support. I’m incredibly proud to be chairman of such a young, vibrant, caring charity.”
Thankfully, not all metabolic diseases are as serious as Campbell’s was but children and families affected face many challenges in their daily lives.
The Trust provides grants up to £100 to families with children aged 10 and under who have a metabolic condition. These grants can be used to cover the cost of essentials such as travel to and from the hospital or help with utility bills; fund a special experience for the whole family to make special memories; or pay for food preparation equipment such as breadmakers and food processors for children with specialist dietary requirements. An additional grant offers financial support in emergency situations.
Of course, these grants wouldn’t be possible without the enthusiasm and hard work of the trust’s supporters and recent years have been a whirlwind of cake sales, craft fayres, mountain treks, cycle rides, fun runs, bag packs, quizzes, golf days and pamper nights. It’s often a family affair and the charity’s fundraising activities have become a way of life for Campbell’s siblings, big brother Dan, 9, Holly, 7, and the latest addition to the family, two-year-old Isla.
The charity has recently been given an additional boost by a one-off £10,000 donation from the Worshipful Company of Grocers, one of the Twelve Great Livery Companies of the City of London, which will support the trust’s grant programme and allow the charity to grow.