*Welcome to the CLDF Media Room* | Press Releases | Archived Press Releases | 2006 April 4 - Father of liver disease boy to run Reading half marathon for children with liver dise

2006 April 4 - Father of liver disease boy to run Reading half marathon for children with liver dise

A local father will be running the Reading half marathon on Sunday 9th April in aid of the charity which provided vital support when his son was diagnosed with a life-threatening liver disease.

Jofi Alexander (37) from Northcourt Avenue will be undertaking the thirteen mile run in aid of Children’s Liver Disease Foundation (CLDF), the only organisation in the UK dedicated to fighting childhood liver disease.

As a baby Jofi’s son Luke was diagnosed with biliary atresia, a disease in which the bile ducts become progressively blocked leading to irreversible liver disease.  Luke underwent a corrective operation called a kasai when he was just a few weeks old, which aims to allow bile to flow from the liver to the gut. Throughout this traumatic time, CLDF helped the family by providing much needed information, advice and emotional support.

Jofi says, “Finding out your child has a life-threatening liver disease is devastating. Most people don’t even realise that children are affected by liver disease, when in reality two children are diagnosed with a liver disease every day in the UK. My wife Rachel and I needed to learn a lot in a very short space of time and often felt very alone, we’d never even heard of biliary atresia. The support that CLDF offers to families in this awful and life-changing situation is vital.”

Luckily Luke’s operation was a success and he is now doing well.  However there is no cure for liver disease and Luke, who attends Crosfield’s boys school will require daily medication and monitoring for the rest of his life. He could also require a liver transplant in the future if his condition deteriorates. 
 
Jofi, who is attempting his first run of this kind, adds, “Luke will turn six this summer which is a real milestone for the family.  Setting myself this challenge seemed a great way to celebrate Luke’s health and will to fight, and to raise much needed funds for CLDF at the same time.  I don’t have a target time, I just hope to get round!  It’s going to be hard work but knowing how my efforts will make a difference is a brilliant incentive to finish the race.”

Jofi has been running three or four times a week recently in preparation for the big day, which starts in Green Park around 10am.  Jofi will also have some moral support via friend of the family, Paul O’Boyle, (also from Reading).  Paul was inspired to join Jofi in the race to help raise extra funds for CLDF, having learnt of the charity’s vital work and support of the family.

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, adds, “There are over 100 different liver diseases which affect children, most are life-threatening, all mean a life-time of care.  We desperately need more funds to continue our vital research, education and support programmes which help to provide a brighter future for them and their families.  We are extremely grateful to Jofi and Paul for their support.  They are undertaking a huge challenge and we wish them every success on the day.” 

Anyone wishing to offer support can pledge online at the special page Jofi has set up at www.justgiving.com/jofi

For further information on the work of the Foundation, please visit www.childliverdisease.org or call 0121 212 3839.

 - 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:
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