CLDF was delighted to receive a cheque for £1250 from East Surrey Masonic Lodge. It was presented by Richard Searles, Master of the Lodge from May 2022 to May 2023, who has a long association with the charity as his son, Adam, now 42, has a childhood liver disease. Richard tells his story:
Adam was born 1st June 1981. From a baby he seemed rather “floppy,” and had a protruding tummy and constantly demanded feeding. He also sweated a lot. From around 18 months, we were concerned that he was not yet walking.
Knowing something was not right, our GP referred him to Sydenham Childrens’ Hospital, where one particular doctor thought he had an idea, and wanted to refer him to Kings College Hospital, where they had a team of doctors specialising in children’s liver diseases.
Adam’s symptoms meant he was referred to Kings
Soon after his consultations at Kings, having had a biopsy, Dr Alex Mowat (later Professor), diagnosed Glycogen Storage Disease type 1b.
We were naturally quite upset that our son had this quite rare condition, but we were given plenty of support from the hospital medical team, and from the newly formed Michael McGough Foundation (which later became Children’s Liver Disease Foundation). Our family were also dedicated to helping us, and even our daughter who was still very young understood her brother’s needs and helped whenever she could.
Adam’s diet was restricted from the start, with absolutely no sugar and we had to stock ample quantities of glucose. As time progressed, he was given cornflour(cornstarch )in water or fruit juice having been advised that some fruit drinks were permitted), and when he was older he was introduced to naso-gastric tube overnight feeding.
This naturally impacted on our family life, especially when we were on holiday. But it didn’t stop Adam from enjoying his childhood. He was a keen performer and appeared in Babes in the Wood and Oliver at the Palladium and Les Miserables at the Palace Theatre in London.
Adam (second left) appeared in Babes in the Wood
We managed to keep Adam’s condition under control with a restricted diet until he was in his mid-teens. At this point Prof Mowat informed us that Adam’s quality of life and ultimate expectancy could be compromised, and therefore a liver transplant was now favoured.
We were very lucky – a suitable donor organ became available within about six months, and his operation was carried out successfully at Kings College Hospital when he was 16.
Adam returned to health and to drama (including a small part in the film version of Les Mis in 2012). Twenty five years later he is now a healthy 42 year old, and all his childhood conditions are behind him, although of course he is on anti-rejection meds for life. He retains his love of drama and, while not on stage, works front of house at the Palace Theatre in London.
In a break from filming Les Mis with Anne Hathaway
I will never forget the support we got from the Foundation in those early days when so little was known about childhood liver diseases, which is why the charity remains close to my heart. I’m so pleased to see there is so much more support available now for young people themselves and I’d like to think Adam’s story gives hope to parents today, receiving the upsetting diagnosis of liver disease in their children.
Adam today
