AVA Raffour was only four days old when she underwent heart surgery.
Just a few weeks later, she was diagnosed with liver disease.
Ten years and 60 trips to the operating theatre later, she is getting set for the 2019 Westfield Health British Transplant Games in Newport.
Her mother, Laura, from the Marshfield area of Newport, explains:
“Ava had heart surgery when she was just four days old. It was at that point the medical team in Bristol noticed she had a problem with her liver. She was taken to Birmingham Children’s Hospital where she was diagnosed with Biliary Atresia.”
The condition involves a narrowing of the bile ducts which means the bile stays in the liver and poisons it:
“She had a procedure which tries to get the flow of bile working again but unfortunately this did not work for long. Three or four months later, she suffered a gastric bleed and we were told she would need a transplant,” added Laura.
By now, she was extremely unwell:
“She was placed on the transplant list in February and she was so poorly, we stayed in hospital for months. She was suffering gastric bleeds and she was given hundreds and hundreds of litres of blood in transfusions.”
The transplant call came on 10 May 2009:
“I was elated. But at the same time, I was devastated because somewhere another Mum had lost their child, but her decision to donate was giving Ava a chance at life.”
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The surgery seemed to go well. But 12 hours later, a clot had formed in the main artery to liver. It had not worked.
“We were taken into the bad news room and were told we had 48 hours to find a donor or we would have to say our goodbyes to Ava. I replied, “You don’t know my Ava!” But she was on full life support, being kept alive by machines. She was so tiny – not even 14lbs – and the chance of finding a second liver in the time was remote.”
Incredibly, Ava kept fighting and a second liver became available five days later:
“We had a rough couple of months with infections and complications but we came home the week before her first birthday. This year, we celebrated her 10th liver transplant anniversary.
“Not many people get a second chance at life, never mind a third so we live life to the max. We don’t let any opportunities pass us by.”
Ava – who is now 10 – will join around 900 fellow transplant recipients who are coming together to take part in 23 different sports and events right across the city of Newport. She will be taking part in the walk as well as some track and field events.
Ava will be representing Birmingham Children’s Hospital:
“When we see the other families, it is always in hospital and when the children are poorly. So it will be good to get together to share a happy, uplifting experience. The main reason Ava wants to take part is to celebrate her donor and donor’s family to show how grateful we are. And it’s a good way to raise awareness of organ donation and to encourage families to have the chat about it.”
Ava will be cheered on by her parents, Laura and Nathan, and her younger brother and sister. Her teacher, Mrs Sullivan, from Marshfield Primary School will also be on the sidelines with some of Ava’s classmates.
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