Barry Barton was the first director of the Michael McGough Foundation, which later became Children’s Liver Disease Foundation. Here he tells his story.
In 1977, the youngest of our five children, Sarah, who was eight and a half, became very jaundiced and was vomiting blood. She was transferred from our local hospital in Surrey by ambulance to Kings College Hospital in London which at that time was the only hospital in the UK offering a service for paediatric liver disease. After many tests she was diagnosed with autoimmune chronic active hepatitis, portal hypertension and cirrhosis of the liver. This led to many years of admissions to Kings and visits to outpatients. At age 22 she had a liver transplant in the adult liver unit at Kings. Sarah is now 50 and married with a 14 year old daughter. Other than being on immunosuppressants she leads a full normal life.
Barry and his wife Pam with Sarah and their dog Sam in 1980.
At the time Sarah became ill, Sonia and Peter McGough had been successful in raising funds to take their son, Michael, to the USA for a liver transplant. Sadly, he died in the USA before that could take place. When they returned to the UK they got in touch with Kings about how best to use the balance of the money that they had raised. The suggestion was made that the money could be used to set up a charity to promote research into paediatric liver disease and provide support for the families of children with liver disease. It was agreed that Kings would write to all the families who had had a child treated for liver disease at the hospital inviting them to attend a meeting with the aim of setting up a charity. There was an enthusiastic response to this proposal and the necessary steps were taken to create the charity. It was at this first meeting that we met Sonia and Peter McGough.
We felt very beholden to what at that time was the very small medical team which was taking such good care of our daughter. We were one of the first families to organise a local fundraising group with our family and friends. Thanks to much hard work, many kinds of fundraising activities and constant support from our local newspaper we were able to raise a significant sum of money over a period of eighteen months.
As a result of this success, the Trustees asked me to take on the role of Director of the charity. This was a full-time salaried position, although my wife and I insisted that the salary should be set at the minimum that we felt we could live on. Thanks to the generosity of one of the original Trustees, John Clement, who was the Chairman of Unigate, an office was provided at their headquarters in Hanger Lane in London. He agreed that all postage, telephone and printing costs would be met be Unigate. He also seconded a full-time secretary to take care of administrative tasks for the charity. For this the charity was charged £5000 per annum. This amount was matched by a donation to the charity from Unigate charitable funds.
At this time, I was living in Norfolk. My routine was to spend Monday at the office, go to Kings on Friday to visit the clinic in the morning and the children’s ward in the afternoon to meet as many families as possible. The rest of the week was taken up with fundraising, seeking publicity via newspapers, radio and TV interviews, supporting existing local fundraising groups and setting up new ones. I would like to stress how helpful and enthusiastic the staff at all levels at Kings were in supporting the work of the charity.
In those early years as a fledgling charity we faced the problems of lack of public awareness and shortage of funds. The only literature we had was a leaflet outlining the functions of the liver, the multiplicity of paediatric liver diseases and the aims of the charity. Over the years it has taken many hours of discussion to produce the excellent range of literature that is now available to families and health care professionals. I also reflect on how high the mortality rate was for children with liver disease when we started the charity, what little was known and how it has improved. I am pleased that the hard work of the early members has led to the development of such a successful organisation. I am sure that they would be delighted to know that parents in touch with the charity have access to medical expertise and a wealth of information which was simply not available 40 years ago.
Sarah with her husband Darren and daughter, Maddie on their wedding day in 2018.