*Welcome to the CLDF Media Room* | Press Releases | Current Press Releases | Sutton mum celebrates the day she feared her son would not see - 26/2/08

Sutton mum celebrates the day she feared her son would not see - 26/2/08

A Sutton mum whose son underwent a liver transplant after being diagnosed with an incurable and life threatening liver disease is urging people to support a national charity close to her heart.

Judith Young, who lives at Carshalton Beeches, is sharing her story for Mother’s Day on Sunday 2 March to help raise awareness of Children’s Liver Disease Foundation – the only organisation fighting all liver diseases of childhood.

When he was six weeks old Judith’s fourth child Richard, now 14, was diagnosed with the liver condition alpha 1 antitrypsin deficiency (ADT).   He had been jaundiced and his stools pale; all signs of possible liver disease.

Patients with alpha 1ATD produce a slightly different form of alpha-1 antitrypsin protein in their liver which then becomes trapped in the cells 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.

The family were told that Richard had an enlarged liver which was also damaged and he was put on medication to control this.  The rest of the family were also tested for the condition with Judith and husband Gerald found to be carriers of A1ATD. Eldest daughter Emma (now 19) was also found to be a carrier, son David (now 17) was clear and daughter Katherine (now 16) was also found to have the deficiency.

In 2003 tests showed that Richard’s liver was failing and the family were told that a liver transplant was needed.  An anxious wait followed until, in December 2004, a donor organ became available and Richard underwent the lifesaving operation. He continued to make steady progress in the following months.

Richard must continue to take medication for life to prevent his body rejecting the donor organ but is back at school studying for his G.C.S.E’s at St Andrews Church of England School in Croydon and hopes to become a chef. Although Katherine also has the condition she has experienced none of the problems that Richard has faced.  

Judith says: “Mother’s Day is extremely special as I realise how close I came to losing Richard. Thankfully CLDF were there 24/7 to help us to cope as liver disease had a huge impact on our family. Few people realise that two children are stuck down by liver disease every day in the UK through no fault of their own or their parents. Thousands of families look to CLDF for information and support, and their research programme gives enormous hope for the future.  These services can only continue with public support.”

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, adds: “Sadly, Judith’s story is one which remains all too common and shows the uphill struggle families face in coping with childhood liver disease. To these families CLDF’s services are vital. People can make a difference to thousands of families by lending their support.

“It is also important to remember that thanks to a special family Richard received his life saving liver transplant in time, but for some the wait is too long.  We would urge people to consider joining the organ donor register and to make their wishes know to their family.”

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

 - Ends -

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