*Welcome to the CLDF Media Room* | Press Releases | Archived Press Releases | 2006 August 8 - Leicestershire boy with life threatening liver disease celebrates fifth birthday

2006 August 8 - Leicestershire boy with life threatening liver disease celebrates fifth birthday

A Coalville couple is about to celebrate an event they thought they might never see - their son's fifth birthday.

Danielle and Douglas Sleigh were over the moon when their first child Ethan was born on 21st August 2001, but their joy was short lived.

Ethan became jaundiced shortly after birth and blood tests revealed that his liver was not functioning properly. After several months of monitoring, Ethan was referred to Birmingham Children's Hospital, one of three specialist liver units in the UK, where Danielle and Douglas were told the distressing news that their son may need a life-saving liver transplant.

After exhaustive tests, Ethan was diagnosed with Alagille syndrome, a condition affecting the liver's drainage system and can also affect the eyes, heart and bones in the spine.

Danielle says, “We were completely devastated when we found out. We had tried to convince ourselves that it was nothing serious but this confirmed our fears - our son had a life threatening liver disease that has no cure." 

Family support officers from Children's Liver Disease Foundation (CLDF), the only national charity dedicated to stamping out childhood liver disease, helped the family through this traumatic time.

Danielle adds: "I don't know what we'd have done without CLDF's support. We had no idea that children could even get liver disease, but two children like Ethan are diagnosed with a liver disease every day. The Foundation gave us lots of accurate information, support and advice which really helped us come to terms with what was happening to us."

Ethan began treatment to help control the condition including a special diet and daily medication, which helps increase bile flow and reduce the severe itching he experiences as a result of the disease.

Douglas says, “Although Ethan is doing well he has to go to hospital for regular check-ups and we are only too aware that a liver transplant could still be required if his condition deteriorates, but we just take one day at a time. Celebrating his fifth birthday is a real milestone and very special for the whole family after all we’ve been through.”

Ethan, who is a pupil at Whitwick St John the Baptist C of E primary, school loves attending swimming lessons each week and is also hoping to start karate lessons with his dad.  The family plan to spend the weekend before Ethan’s birthday with friends and family at Conkers Park in the National Forest and on the big day itself are going to Waterworld Splash Park in Stoke on Trent.

Danielle and Douglas are dedicated to raising awareness of the fact that children can be affected by liver disease and to promoting the work of CLDF.
Danielle adds, “Initially there was so much fear of the unknown and CLDF were a real lifeline.  It was fantastic to know that there was an organisation we could turn to for information and advice, or who we could just pick up the phone to whenever we needed a bit of extra support.  It is also great to know that CLDF’s research projects could help like children like Ethan in the future, but to continue its vital work the charity needs to raise more funds each year.”

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, adds, "It's great to hear that Ethan is doing well and we wish him a very happy fifth birthday. When a family like the Sleigh’s receive a diagnosis of childhood liver disease, their world literally falls apart. We are there to help pick up the pieces and work towards providing a future for children like Ethan.

"Not many people realise that more children are diagnosed with a life threatening liver disease than childhood leukaemia and there are currently no cures, just a lifetime of care ahead. There are over 100 different liver diseases which can affect any child of any age and we desperately need to raise more funds to continue and enhance 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 -

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