*Welcome to the CLDF Media Room* | Press Releases | Archived Press Releases | 2006 December 18 - Family of local liver disease boy use first transplant anniversary to help childr

2006 December 18 - Family of local liver disease boy use first transplant anniversary to help childr

The family of a Dorset boy celebrating the first anniversary of his life saving liver transplant early next month are using the event to highlight the work of Children’s Liver Disease Foundation (CLDF).

Shortly after his birth on 9th February 2005, Dylan Murphy, who lives with mum Kay, solider dad Anthony and siblings Cai (4) and Ella (6) at Blandford camp, was diagnosed with biliary atresia – a life threatening and incurable liver disease in which the bile ducts become progressively blocked leading to irreversible liver damage. 

Dylan underwent a corrective operation called a kasai but this proved to be unsuccessful.  The family were told that Dylan’s only hope was a liver transplant and the desperate wait for a donor organ began.

Whilst on the transplant list Dylan’s condition started to seriously deteriorate, but to the family’s great relief, on 4th January, specialists confirmed that a liver had become available and Dylan underwent the life saving operation. 

Since Dylan was first diagnosed, the family have received practical and emotional support from CLDF, a unique national charity dedicated to fighting childhood liver disease. 

The family are using Dylan’s transplant anniversary celebrations to help raise awareness that children can be affected by liver disease – two children are diagnosed with a life threatening liver disease every day in the UK - and of the vital work undertaken by CLDF. 

Anthony explains, “CLDF have been a lifeline since Dylan was diagnosed.  It was horrendous to be told our child had this incurable disease that we’d never heard of, but CLDF helped us to feel less alone.  They provided information and advice and it was fantastic to know they were there for us, especially when we were told that Dylan needed a transplant. It is still so reassuring to know that they are there whenever we need them.”

Dylan has progressed well since his transplant although he must take medication for the rest of his life to prevent him rejecting his new liver. 

Kay who has recently become a ‘CLDF ambassador’ to help promote CLDF’s work adds, “I did a parachute jump last year and we have organised lots of fundraising activity with another family affected by childhood liver disease who also live on the camp. However in addition to raising much needed funds, it is also vitally important to raise awareness as few people realise that any child of any age can be affected by liver disease.

“Dylan has come on so much in the last year and this milestone will be special for the whole family. We will also be thinking of the family who gave us a unique gift a year ago.”

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, adds, "It is great to hear how well Dylan is doing a year on from his transplant and we are very grateful to the family for using this special milestone to champion our work. Few people realise that there are over 100 different liver diseases and more children are diagnosed with a liver disease than childhood leukaemia, so thousands of families are affected.  We desperately need to raise more funds to continue and enhance our family support, education and research programmes. 

“But there is another very important message here, without the very generous gift from another family Dylan would not be here today.  We are all enormously grateful for this unselfish act and urge people to not only support CLDF’s work but also join the organ donor register (www.uktransplant.org).  The simple fact is that you are more likely to be an organ recipient than an organ donor.  If you’re prepared to accept a donor organ then you should be prepared to be an organ donor.”

For further information on the work of the Foundation, please visit www.childliverdisease.org or call 0121 212 3839.

 - Ends -

For further information on this story please contact: 
Rachel Markham, Children’s Liver Disease Foundation,
Tel: 0121 212 6012, e-mail: communications@childliverdisease.org

Note to editors:
Children’s Liver Disease Foundation is a unique national charity that fights childhood liver diseases through funding pioneering research and educating healthcare professionals and the general public. Formed in 1980, it provides professional, emotional support to families affected and is the only organisation of its kind in the UK.

Childhood liver disease – the facts
• More children in the UK are currently diagnosed with a liver disease than childhood leukaemia
• At least two children are diagnosed with a liver disease every day in the UK
• Most childhood liver diseases are life threatening; all mean a lifetime of care
• There are over 100 different liver diseases that can affect babies, children or young people
• For most childhood liver diseases the cause is unknown
• Liver disease has no cure
• CLDF is the only organisation in the UK dedicated to stamping out childhood liver disease