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West Sussex mum raises ?500 for Big Yellow Friday - 22/03/08

A West Sussex mum and dad whose daughter was diagnosed with an incurable liver disease and underwent a life saving liver transplant has raised over £500 to help thousands of children with liver disease.

Donna and Dave Bowen, who run Bellapink gift shop in Wittering Walk, East Wittering, organised a ‘Big Yellow Day’ on Saturday 8 March in aid of Children’s Liver Disease Foundation (CLDF); a unique national charity which offers 24/7 emotional support to families affected by liver disease.  The day was in support of CLDF’s first ‘Big Yellow Friday’ national fundraising day on Friday 7 March which encouraged supporters to organise events with a yellow theme.

Donna’s daughter Starre (16) was diagnosed at eight weeks old with Alagille Syndrome, a rare genetic liver condition affecting around one in 100,000 children. 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 and why this should happen is not yet understood. 

Donna explained: "From birth Starre suffered many debilitating symptoms including being diagnosed with jaundice, and by eight weeks we were told the devastating news that Starre had a serious liver disease, leading to three years of torment . The symptoms Starre had to endure included severe rickets, intense itching all over her body with no relief, and the steady agonising deterioration of Starre’s health. After undergoing surgical procedures and numerous drug therapies, Starre’s little body could not cope any longer and a liver transplant had now become her only hope of survival."

In 1995 when Starre was three, and after three months on the waiting list, Starre underwent the life saving operation and has since done extremely well with medication and regular check-ups.

Since Starre was diagnosed the family has received support and information from CLDF and were keen to help raise funds for the charity.  The ‘Big Yellow Day’ saw customers and supporters take part in a range of fun activities to raise funds including face-painting, hook-a-duck, lucky dip and tombola.  Yellow ribbons were also sold.

Donna says: “Not only did we raise a fantastic amount for CLDF but we were also able to highlight the fact that two children like Starre are diagnosed with a life threatening liver disease every day in the UK.  CLDF not only offers emotional support to these families but also funds research into the causes.  However its vital work can only continue with support and I would like to thank everyone who took part in the fun-day.”

Catherine Arkley, chief executive of CLDF, adds: “We would like to congratulate Donna and everyone who supported the Big Yellow Day and made it such a success.  As Donna and her family know firsthand, CLDF provides a lifeline to many families whose lives are devastated by liver disease.  Every penny raised is desperately needed and will help to give families affected by childhood liver disease a brighter future."

 Ends 

Further information from Jill Priest at Professional Communications on 01886 822077

or after 1st April from  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