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Inverness mum faces Mothers Day in Hospital as daughter battles liver disease

An Inverness mum who faces spending Mother’s Day in hospital as her daughter battles a life threatening and incurable liver condition is urging people to support a charity close to her heart.

Heather Viney, from Tomatin, is sharing her story for Mother’s Day on Sunday 2 March to help raise awareness of Children’s Liver Disease Foundation (CLDF) - the only organisation fighting all liver diseases of childhood.

The charity has offered support to the family since Heather’s daughter Meggie (4) was diagnosed with Alagille Syndrome - a rare genetic liver condition affecting around one in 100,000 children - when she was just seven weeks old.

The condition may also cause abnormalities to other parts of the body, including the heart, eyes and bones.  The severity of the condition varies with some individuals being completely well whilst others become seriously ill.  Why this should happen is not yet understood.  

Since the diagnosis Meggie has had to overcome many hurdles and spells in hospital. She has suffered a heart murmur since birth and is due to have a third heart catheter later this month. Heather expects to be spending Mother’s Day by Meggie’s bedside in hospital.  The family have also been told that Meggie may one day need a liver transplant.

Heather, who went on to have a second daughter, Iona-Grace, in December 2005 says: “Meggie has endured so much since she was born, yet she is full of fun. She is starting primary school later this year but it can be hard to think of the future as we know we still have a lot to face. I didn’t even know that children could be affected by liver disease until Meggie was diagnosed so CLDF’s support has been a lifeline.

“Few people realise that two children are diagnosed with a liver disease every day in the UK through no fault of their own or their parents. CLDF’s support makes a huge difference to these families and their research programme gives enormous hope for the future. It is vital that their services continue but they can only do so with public support.”

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, adds: “Sadly, Heather and Meggie’s story is one which remains all too common and shows the uphill struggle families face in coping every day with childhood liver disease.  People can make a difference to thousands of families by offering support and every penny really does help.”

Heather is supporting CLDF by organising a fundraising event in May. Children at Strathdearn Primary School will be ‘wearing something yellow’ on Friday 30 May and taking part in sponsored activities. The school will also host a funday on Saturday 31 May for members of the public and Heather is currently looking for prizes for raffles and competitions on the day.  Anyone wishing to make a donation can contact CLDF on 0121 212 6022.

For further information on the work of the Foundation and to sign up to the organ donor register visit CLDF’s website at www.childliverdisease.org

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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:
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