CLDF was started by families for families. We’re delighted to share here the stories of the people who have shaped CLDF and those for whom the charity has played a part in their lives.

If you would be happy to share your own story please email press@childliverdisease.org or click here.

How it all began…..

Our families are at the heart of everything we do and CLDF began with one family’s story. Here, in this moving article we have reproduced from The Sunday Times in 1979, Peter and Sonia McGough explain why they started The Michael McGough Research Fund.

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The early days of the charity

Barry Barton was the first director of the Michael McGough Foundation, which later became Children’s Liver Disease Foundation. Here he tells his story.

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Rosie’s Story

Rosie’s story shows just how limited the medical treatment was for children with liver disease 40 years ago. Here she shares her story about her daughter Felicity.

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Where are they now? – Clare’s Story

Clare features on the front cover of CLDF’s first supporter magazine, CHILD, which was published in 1990. Aged seven, she had just had a liver transplant at Birmingham Children’s Hospital. Here Clare, who was born with biliary atresia, describes her experience of growing up with a liver disease.

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British Paediatric Surveillance Unit Survey on Biliary Atresia – A Game Changer for Children’s Liver Disease Foundation? By Catherine Arkley

In 1999 the Department of Health (DoH) designated surgery for biliary atresia to be confined to specialist children’s liver units in England and Wales. In addition, they decided there would a third specialist children’s liver centre established, based in Leeds. Catherine Arkley, former CLDF Chief Executive, writes about the background, what happened and why it was so important.

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Where are they now? Lucy’s story

Lucy, who is now 32, is a familiar face from CLDF magazines over the years. Here, she tells her story.

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Where are they now? Alex’s story

Alex, who is 22, has biliary atresia and was featured on the front cover of CLDF’s Delivery Easter Extra in 1999. He had a successful Kasai procedure when he was seven weeks old and as a child, didn’t give much thought to his liver condition. Alex and his parents share their experiences.

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Where are they now? Millie’s story

Millie, who has Alagille syndrome, featured on the front cover of Delivery magazine in 2002, with her dad, who had run the London Marathon. Her mum, Alison, explains why fundraising is important to her family.

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Celebrating 27 years with my new liver

Many of the young people we support are living full and active lives thanks to their liver transplant. Jane’s daughter, Naomi, celebrates the 27th anniversary of her liver transplant this month.

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Where are they now? The Redgates

Karen and David and daughter, Emma, who is now 20, have appeared in numerous CLDF publications over the years. Here the family explain what the charity means to them.

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I know how lucky we are – Margaret’s Story

Margaret has been an office volunteer for CLDF for 27 years. Thirty years ago, this month, her son, Chris, received a liver transplant. Here is her story.

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Emily’s Story

When Carol and Peter’s daughter, Emily, was born with liver problems, CLDF didn’t even exist. Here is their story.

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Why we run for CLDF

Paul and Liz have always been keen runners. When their grandson was born with a rare liver disease 22 years ago, running became a way of fundraising as well as a hobby. Here Liz tells their story.

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Erin’s Story

Ten year old Erin has just celebrated her ten year transplant anniversary. Her parents, Kirstin and Jamie, share her story.

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Aarron’s Story

Aarron’s mum, Jacqueline, explains why CLDF is important to her family and its impact on Aarron.

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Georgina’s Story

Although Georgina was born with a childhood liver disease, it was not until she was an adult that her condition had a major impact on her. Here is her story.

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Why the Isle of Wight gets pickled

Of all the wonderful fundraising events which our supporters run for CLDF, the Isle of Wight Pickle Wars are surely the most unique. Their organiser, Terry, explains how it all came about.

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CLDF – A Trustee’s Perspective By Tom Ross

Tom Ross was appointed a Trustee in 1997, became Chairman in 2001 and retired from the Board in February 2020. Here he reflects on CLDF’s achievements over his time as a Trustee, and on the challenges and opportunities for CLDF in years to come.

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CLDF’s Northern Ireland Family

When your child is diagnosed with a liver disease, there’s nothing like the support of someone who knows exactly what you are going through. At CLDF, we love to bring families together and nowhere is this family network stronger than in Northern Ireland. We caught up with four mums to find out more.

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How Joe’s story is still helping other children

Like any parents, when Saskie and Des were told that their five year old son, Joe, would need a liver transplant, they wanted to prepare him as best as they could. Read on to find out how their family were instrumental in the development of Joe’s Liver Transplant Story.

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Working hand in hand for 20 years

As well as being the 40th birthday of CLDF, 2020 marked the 20th anniversary of the specialist liver unit at Leeds Children’s Hospital, which was established after the Department of Health ruling that paediatric liver surgery should be confined to specialist regional centres.

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Why West Sussex was such a CLDF success

In the early days of Children’s Liver Disease Foundation, there were no online fundraising pages, or sharing of events on social media. Instead fundraising was largely regional and organised by different branches around the UK. One of the most successful was the West Sussex Branch.

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Proud to be associated with CLDF

CLDF has always worked hand in hand with medical specialists to ensure the best outcomes for our children and young people. Here Dr Pat McKiernan, who was closely associated with us for many years, tells what the charity means to him.

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A 30 year partnership with our Birmingham neighbours

The team at the liver unit at Birmingham Children’s Hospital have worked closely with CLDF since they began 30 years ago. Professor Deirdre Kelly and Lindsay Hogg (Principal Specialist Nurse) share their thoughts on the charity.

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This is part of who we are

Six year old Ada has become a familiar face to many of our supporters as she has joined her parents, Emma and Mick in their fantastic fundraising campaign for CLDF. Here, Emma explains how and why it all came about. 

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