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2006 August 1 - Family of local liver transplant boy inspired to run Hydro Active Challenge for chil

The mother of a local boy who underwent a life saving liver transplant when he was just 10 months old will be taking on the challenge of the Women’s Hydro Active 5k run in Hyde Park on Sunday 3 September to raise funds for children with liver disease.

Nishma Shah (33), an accountant from Pinner, is taking on the running challenge along with mum Niru and aunt Bharti to raise funds for Children’s Liver Disease Foundation (CLDF), the only organisation in the UK dedicated to fighting childhood liver disease.

Shortly after his birth in March 2005 Nishma’s son Kian was diagnosed with biliary atresia, a life threatening liver disease in which the bile ducts become progressively blocked leading to irreversible liver damage.

Kian underwent a corrective operation called a kasai when he was just a few weeks old but his condition continued to deteriorate and Nishma and husband David were given the devastating news that Kian’s only hope was a liver transplant.

Kian was put on the transplant waiting list in October 2005.  In January 2006 the family received the call they had desperately been waiting; a donor liver had become available and Kian underwent the life saving transplant at Kings College Hospital, London – one of three specialist liver units in the UK.  Since the operation Kian has been progressing well, although he will require medication for the rest of his life to help prevent him from rejecting his new liver.

Nishma and her family were keen to give something back to CLDF as a thank you for the practical and emotional support they had received from the charity since Kian was diagnosed, and to help raise funds for the starfish appeal at the paediatric liver centre at Kings College Hospital to help improve facilities. After learning of the fundraising run, the family decided it was the perfect way to raise funds.

Nishma says, “Few people are aware that two children are diagnosed with a liver disease every day in the UK. CLDF is committed to helping these children and their families and I am now committed to helping CLDF.  I want to give something back for all the encouragement and support CLDF has given us throughout this awful time.  We have not done a run like this before so it will be a great achievement for us all to get round but we have a great incentive.  I just hope we can raise as much as possible for CLDF and Kings.”

The family have been training hard in preparation for the run, visiting the gym regularly and cutting down on junk food.

Catherine Arkley, chief executive at Children’s Liver Disease Foundation says, "It is great to see how well Kian is doing after his transplant, but families like Kian’s still do not know why or how he had biliary atresia. The fact is that there are over 100 different liver diseases which can affect any child of any age and quite simply we don’t know why they occur.  We desperately need more funds to continue our support, education and research programmes and we are very grateful to Nishma and her family for their fundraising efforts on our behalf.  We wish them every success on the day.  The liver transplant saved Kian’s life which is fantastic news.  However, there are still many children waiting for a donor organ and we know of children who have died on the waiting list.  We also ask that people think about organ donation and consider joining the organ donor register on www.uktransplant.org.uk”

Anyone wishing to pledge support for the run can visit the special on-line donation page at www.justgiving.com/kian

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

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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:
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