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2006 April 19 - Nan of liver disease twins prepares afternoon tea to raise funds for children's char

NAN OF LIVER DISEASE TWINS PREPARES AFTERNOON TEA TO
RAISE FUNDS FOR CHILDREN’S CHARITY

A local woman is organising an ‘afternoon tea in the pavilion’ event on 28th April at Flore village playing field to raise funds for children with liver disease.

Jill Hodgkinson from Flore, Northants, is organising the event to raise funds for Children’s Liver Disease Foundation (CLDF), the only organisation in the UK decided to stamping out childhood liver disease.

Jill’s twin grand-daughters, Saskia and Lydia (now three) who live in Brighton, were diagnosed with a life-threatening liver disease, Alpha 1 antitrypsin deficiency (alpha 1 ATD) when they were nearly two years old.

People with alpha 1ATD produce a slightly different form of alpha-1 antitrypsin protein in their liver which becomes trapped and can cause irreversible liver damage.  At present there is no cure for the disease – just treatment to cope with the symptoms of liver damage. 

Lydia was diagnosed with the disease after she became unwell with a temperature and had become tired and floppy. Her liver was shown to have already been damaged by the disease and she was put on special supplements, vitamins and medicine. Lydia’s twin Saskia was tested and was also shown to have alpha 1ATD, however Lydia’s body coped less well with the disease. 

Lydia has now been shown to have an improved liver function and is doing well.  However, she will require daily medication and monitoring for the rest of her life and may need a liver transplant in the future.  Saskia will also be checked regularly for any signs of ill health. 
 
Since the twins diagnosis the family have received practical and emotional support from  CLDF and Jill was keen to give something back by raising funds for the charity.

Jill says, “My daughter and her family have received tremendous support from the Foundation over the past couple of years, it really has been a lifeline.  Most people are not even aware that children can get liver disease so when the twins were diagnosed it came as a great shock.  We have since learnt that two children every day in the UK are diagnosed with a liver disease, so there are many families going through similar experiences. I wanted to do something to help. I hope people will come and support the event and I will be keeping my fingers crossed for a sunny day!”

Afternoon tea and cake will be served in the pavilion between 2.30pm – 4.30pm.  A raffle and bring and buy sale will also take place.

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, adds, “We are delighted that Lydia and Saskia are now doing so well.  Families are truly devastated with a diagnosis of childhood liver disease, most of which are life threatening, all mean a lifetime of care.  We are here to help pick up the pieces as well as working to provide a future through our research programmes, for which we desperately need more funds. We thank Jill for organising this fundraising event.”
 
For further information on the work of the Foundation, please visit www.childliverdisease.org or call 0121 212 3839.

 - Ends -
Note to editors:

For further information please contact Rachel Markham, Children’s Liver Disease Foundation, Tel: 0121 212 6012, e-mail: communications@childliverdisease.org

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