Freddie celebrates 10th anniversary of liver transplant in Organ Donation Week

Organ Donation Week (September 22 – 28) begins today and a 13-year-old boy from Ossett has more reason to mark it than most, as he celebrates the 10th anniversary of his life-saving liver transplant.  

Freddie was born with Alagille syndrome, a rare genetic condition which occurs in around 1 in 30,000 live births. It can affect different parts of the body including the liver, heart, kidneys, eyes, face and bones. In Freddie’s case, it was his liver which was initially worst affected. 

“Freddie was six months old when he was diagnosed with Alagilles” says his mum, Emma. “It was very tough news to take. His dad, Phil, and I had already been researching the possible reasons why he was failing to thrive, and we knew how serious this condition was.”  

 Despite expert care at Leeds Children’s Hospital, Freddie’s condition was deteriorating and when he was two and a half, he was listed for a liver transplant.  

 “We knew that time was of the essence but also that there was a shortage of organ donors,” says Emma. “So, several of us in the family put ourselves forward to be a living donor and Phil’s cousin, Chloe, turned out to be the best match. 

  “It was an amazing thing to do. She passed all the relevant tests, and the operation was booked. But five days before surgery was due to took place, we got the call to say that a donor liver had been found. And on September 21st 2015, five days after his third birthday, Freddie got his gift of life in a nine-hour operation.”  

 Although his liver transplant was a success, Freddie’s troubles were far from over. Six months later, he underwent open heart surgery, and three months after that, he became seriously ill with sepsis and pneumonia. 

But Freddie proved himself a fighter and ten years after his first major surgery, he is a happy, active teenager, who enjoys school, loves football and has just taken up golf.  

 Freddie’s family have raised thousands to help others in their situation, including £53,000 for Children’s Liver Disease Foundation (now merged with British Liver Trust) who provided them with information and support following Freddie’s initial diagnosis. 

  “A diagnosis of a rare liver disease is shattering for any family,” says Michelle Wilkins, the charity’s head of Children and Families Services. “So, it’s wonderful to see how Freddie is now enjoying life to the full and his story is an inspiration for any family who are staring at what seems like an impossible journey.” 

Freddie and his family remain passionate about raising awareness of the need for organ donation: “Although Freddie’s condition has led to multiple surgeries and hospital procedures, without his liver transplant, he simply wouldn’t be here,” says Emma. “I have been privileged to meet the mother of Freddie’s donor, and we are grateful every day for her incredibly generous decision. We would urge everybody, if you do one thing this Organ Donation Week, just share your wishes about organ donation with your family. You literally can save a life.”