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2006 August 15 - Edinburgh girl celebrates 5th anniversary of life saving liver transplant (Millie S

The family of an Edinburgh girl who was diagnosed with an incurable liver disease as a baby is using the 5th anniversary of her life saving liver transplant to highlight the work of Children’s Liver Disease Foundation and to urge people to join the organ donor register.

Alison Platts and Bill Stobie were delighted when their second child Millie was born in November 2000, but their joy was short lived.

Millie became jaundiced shortly after birth and tests revealed that her liver was not functioning properly. When she was eight weeks old Millie was diagnosed with Alagille syndrome, a condition affecting the liver’s drainage system which can also affect the eyes, heart and bones in the spine.

Alison says, “We were shocked and overwhelmed – it was hard to accept that Millie had a life threatening disease which has no cure.  There was a lot of information to take on board, we didn’t know anything about childhood liver disease but have since learnt that two children like Millie are diagnosed with a liver disease every day.”

Millie began treatment to help control the condition including a special diet and daily medication. However her condition continued to deteriorate and specialists at Birmingham Children’s Hospital – one of three specialist liver units in the UK - told the couple that Millie’s liver was failing and she would need a liver transplant to survive.

Millie was placed on the transplant list. Luckily a donor organ was found in time and she underwent the life saving operation on 31st August 2001.  Millie will require monitoring and daily medication for the rest of her life to prevent her from rejecting her new liver, but she has made steady progress since the operation.  Millie is now a happy and lively five year old who recently started school at Sciennes Primary School.  The fifth anniversary of her transplant will be a special day for the whole family.

”We are so grateful to the donor’s family whose extraordinary gift saved Millie’s life and we hope that by sharing Millie’s story we can encourage people to join the organ donor register. We are also committed to promoting the work of Children’s Liver Disease Foundation, the only national charity dedicated to fighting childhood liver disease. The Foundation was a lifeline when Millie became ill. They gave us lots of information, support and advice and it is also great to know that their research projects could help children like Millie in the future,” says Bill.

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, adds, "We are delighted that Millie is doing so well five years on from her liver transplant. Millie’s story highlights how transplant has given a future to children affected by liver disease but tragically children do still die due to a lack of donor organs.  We urge the public to think about registering on the UK organ donor register (www.uktransplant.org) and talk to their relatives to make their wishes known.

“Few people realise that more children are diagnosed with 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.

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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