*Welcome to the CLDF Media Room* | Press Releases | Archived Press Releases | 2006 July 27 - West Wickham boby diagnosed with liver disease looks forward to 5th birthday

2006 July 27 - West Wickham boby diagnosed with liver disease looks forward to 5th birthday

A West Wickham boy who was diagnosed with a life threatening liver disease as a baby is looking forward to celebrating his 5th birthday on 2nd August.

Melanie and Dave Kenny were delighted when their first child Sean was born on 2nd August 2001, however their joy was short lived. Melanie was being kept in hospital for a few days for routine observation due to high blood pressure when the midwife noticed that four day old Sean was looking slightly jaundiced.

Blood tests were arranged to investigate the cause of the jaundice and these showed that Sean’s liver did not appear to be functioning properly. The family were allowed to return home when Sean was six days old but regular blood tests continued. 

Unfortunately after three weeks the test results had not improved and the family were referred to the Kings College Hospital, London, one of three specialist liver units in the UK.

After three days of investigations at the hospital Melanie and Dave were given the devastating news that Sean had been diagnosed with biliary atresia, a disease in which the bile ducts become progressively blocked leading to irreversible liver damage.

Mum Melanie says, “When we were admitted to Kings it was very hard to accept.  No-one expects their new baby to be ill and we felt very helpless.  We didn’t even realise that children could be affected by liver disease and we had never heard of biliary atresia.  Being told that Sean had this life threatening disease turned our world upside down, but at the same time it was a relief to have a diagnosis so we could start deal with it.”

Melanie and Dave were told that Sean would need to undergo a corrective operation called a “kasai” (named after the Japanese surgeon who pioneered the procedure).  If this failed Sean’s only hope would be a liver transplant. Sean underwent the operation on 21st September 2001 when he was still just seven weeks old. 

To the family’s great relief, Sean recovered well from the operation and, although he will require daily medication for the rest of his life and could require a liver transplant in the future if his condition deteriorates, he has since gone from strength to strength.

Dad Dave says, “We know how lucky we are as not all children do so well after the kasai operation. Sean has been so brave and continues to take his medication with only the occasional quibble!  He has been re-admitted to hospital on two occasions due to suspected bowel infections, however these have luckily proved to be false alarms and day to day he is doing really well. He’s had some ‘normal’ medical issues like having his tonsils out but he takes it all in his stride and we just take one day at a time.  Celebrating Sean’s fifth birthday will be a special day for the whole family and a real milestone after all we’ve been through.”

Sean, who attends Oak Lodge School enjoys playing with his younger brothers Ryan (3) and Thomas (1).  He is mad about cars and has recently started playing football and can regularly be found running around football pitches making the noise of car-engines revving.

A magician will be entertaining Sean and his friends on the big day itself and the party will have a cars theme.  Sean has also asked for toys relating to the new film ‘Cars’ for this birthday.
Now that Sean is doing so well the family are keen to raise awareness of childhood liver disease and the work of Children’s Liver Disease Foundation (CLDF), the charity which offered vital support when Sean was diagnosed.   
Melanie adds, “Initially there was so much fear of the unknown and CLDF were a real lifeline, providing much needed information and also emotional and practical support at a time when we felt very alone.  Most people are unaware that two children are diagnosed with a liver disease every day in the UK, so the charity’s support services are vital.  CLDF also fund research into childhood liver diseases which could help children like Sean in the future.”

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, adds, "We are delighted that Sean is doing so well and wish him a very happy fifth birthday.  Families like the Kenny’s are truly devastated with a diagnosis of childhood liver disease.  We are here to pick up the pieces as well as work to provide a future for the family, who still do not why or how Sean had a liver disease.   The fact is that there are over 100 different liver diseases which can affect any child of any age and quite simply we don’t know why they occur.  We desperately need more funds to continue our support, education and research programmes.”

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

 - Ends -

Photo available on request

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:
The 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