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2006 July 7 - National Transplant Week - Mother of liver transplant boy links with CLDF

As National Transplant Week approaches, the mother of aliver transplant boy is linking with Children’s Liver Disease Foundation to urge people to join the organ donor register

To celebrate National Transplant Week which takes place from 9th-15th July, the mother of a Bristol boy who underwent a life saving liver transplant is joining forces with Children’s Liver Disease Foundation to urge the public to join the organ donor register.

Montpelier mum Valerie Edwards gave birth to son Tyrelle in October 1994.  From birth he was jaundiced but Valerie was told by healthcare professionals that this would clear up over time. However Tyrelle’s jaundice continued and after Valerie again voiced her concerns he was referred by the health visitor to Bristol Royal Hospital for Children – he was now five months old.

Valerie was told that they suspected Tyrelle may have a problem with his liver.  He was admitted for further tests which diagnosed Alagille Syndrome, a liver condition which affects the drainage system in the liver and leads to poor bile flow causing liver dysfunction.  The condition, which has no cure, may also include abnormalities in the heart or blood vessels, the eyes and bones in the spine. 

Tyrelle was transferred to Birmingham Children’s Hospital – one of three specialist liver units in the UK – for further tests and monitoring.  He began treatment to help control the condition including a special diet and medication which continued when he returned home.  Tyrelle and Valerie returned to both Birmingham and Bristol hospitals over the next five years for regular check ups.

In July 2000 Valerie was given the heartbreaking news that Tyrelle was continuing to deteriorate and he would need a liver transplant in order to survive.  Tyrelle was placed on the transplant list for the desperate wait for a donor liver to become available.

In July 2001, to their great relief, a donor liver became available and Tyrelle received his life saving liver transplant.  Valerie says, “I was at my friend’s house when we got the call we’d been praying for.  We were rushed back to Birmingham and Tyrelle was in theatre for nine hours.  He made an amazing recovery and was out of intensive care the next day and we returned home about six weeks later.  Although he has had small set backs since the operation and will require regular monitoring and daily mediation for the rest of his life to help prevent him rejecting his new liver, it has been a life transforming operation for him and for the family as a whole.”

Tyrelle is now a happy and very active eleven year old who loves playing football and enjoys attending St Barnabas Church of England School.

The family have received emotional and practical support from Children’s Liver Disease Foundation, the only organisation in the UK dedicated to fighting childhood liver disease, since Tyrelle was diagnosed. Now that Tyrelle is doing so well the family are working with the charity to help raise awareness that children are affected by liver disease and to urge the public to join the organ donor register.

Valerie adds, “When Tyrelle was first diagnosed with a liver disease it came as a complete shock, I didn’t even know children could get liver disease. To then be told he needed a transplant was heart-breaking. It is hard to believe that five years ago Tyrelle received his transplant.  We are so lucky that it came in time and are so grateful for that family’s special gift. We hope people who read our story will consider joining the organ donor register.  We know first hand what a difference this can make.”

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, says, “It is great to see how well Tyrelle is doing nearly five years on from his transplant.  Transplants help give a future to children with liver disease and really can transform lives. Our thoughts go to the donor family who have given a most precious gift.  I hope they have some comfort in knowing how much hope and joy they have given to others through their unselfish act.     However there continues to be a desperate lack of donor organs and children do die as a result. We urge the public to think about registering on the organ donor register (www.uktransplant.org) and talk to their relatives to make their wishes known. The difference it could make to a family is indescribable.”

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

National transplant week
National Transplant Week run by Transplants in Mind  takes place between 9th – 15th July and is a week of publicity and
events to promote organ and tissue donation for transplantation. For more information visit www.transplantsinmind.org.uk or call
0117 931 4638