Running for Naomi – couple raise £3,600 to fight childhood liver disease

Carmelina Alongi and Daimon Wellington from Virginia Water did their first running event last month when they took on the Richmond 10k to raise funds for Children’s Liver Disease Foundation. They were incredibly proud, not only to finish the race but to raise an amazing £3,645!

Children’s Liver Disease Foundation is a special charity for them both as Carmelina explains:

“Our beautiful daughter Naomi was born in May 2014. Like many babies, she was jaundiced but as the weeks went by her jaundice didn’t clear.  Every month she had blood tests and hospital visits and in September that year she was transferred to Kings College Hospital London, where the liver team took her down to theatre and diagnosed her with a liver disease called biliary atresia.  This means the bile ducts in her liver are damaged, bile cannot flow from her liver to the bowel and this causes scarring of the liver.

“In Oct 2014 we received the heart wrenching news from the doctors that, without a liver transplant, Naomi would only live until she was two and a half.  Our world fell apart. Just one in 16,000 children are diagnosed with biliary atresia and we couldn’t believe our little girl was that one.

“Naomi also had pulmonary stenosis (a narrow heart valve) which most children grow out of, but as she needed a liver transplant, the doctors at Kings decided they wouldn’t list her for transplant until her heart was strong enough to withstand transplant surgery. So in March 2015 Naomi had open heart surgery at the Evelina Children’s Hospital London.  This major surgery had an adverse effect on Naomi’s liver and two weeks later at home, she vomited blood clots.  An ambulance rushed us to hospital where she was resuscitated and had a blood transfusion.  We were transferred to Kings where they stabilised her but due to her critical condition she was priority listed for transplant.  Our prayers were answered after just ten days when an amazing person and their family made a decision to donate their organs and save Naomi’s life.

“Day to day life for Naomi is still a medical challenge and involves numerous hospital visits and appointments but transplant has given her the greatest gift of all – the gift of life.

“Children’s Liver Disease Foundation is important to us because they provided us with information about Naomi’s rare condition and were there with emotional support through what was an incredibly difficult time. We know that they will be there for Naomi too as she grows up and crucially they provide funding for research into children’s liver disease.

“We decided that we would like to do something to give something back to CLDF and the Richmond 10K seemed like a good idea. We are so pleased to have completed it but even more so to have raised much needed funds for a charity which means so much to us.”

 

Alison Taylor, Chief Executive of Children’s Liver Disease Foundation commented: “CLDF is the only UK charity dedicated to fighting all childhood liver diseases and we rely almost entirely on voluntary donations, so we are so grateful to Carmelina and Daimion for taking on the Richmond 10K and raising such a fantastic total.”