Kirknewton mum in charity run after daughter's liver disease
A MUM whose daughter was born with a life-threatening liver condition will take on a running challenge to raise awareness of organ donation which saved the girl's life.
Rebecca Allan, 18, from Kirknewton, was diagnosed with rare liver disease Biliary Atresia seven weeks after her mum Nicola gave birth in St John’s Hospital, Livingston.
“When you are pregnant and expecting your first child, you never expect to hear something like your baby has liver disease and will need a transplant,” Nicola, 37, said. “She was born a sort of orange colour and was jaundice.
“We were completely shocked but decided to take each day as it came. She spent a lot of her young life in hospital and she would get tired a lot.”
The Balerno High School pupil struggled with extreme tiredness and spent a lot of her younger life in and out of hospital.
Her condition deteriorated when she was 15 and doctors rushed to put her on the organ donation waiting list. She was told her only chance of survival would be a successful liver transplant.
“It wasn’t until her condition got more serious when she was 15 that we were told a transplant was absolutely necessary,” Nicola explained. “They don’t put patients on the list until they are in liver failure. But two years later, we got the call at 4am to say that Rebecca needed to go for the transplant immediately.”
It was the news Nicola had been waiting for but she admitted that the moments between the call, being taken by ambulance to Edinburgh Airport and flown to Birmingham Children’s Hospital are a blur.
“It was such a long and nerve wracking day,” Nicola said. “We had to wait until 9pm for Rebecca to go to theatre. It was a scary time.”
And she will always be grateful to the donor and to the Children’s Liver Disease Foundation who have continued to offer them support throughout Rebecca’s life.
“We cannot ever thank Rebecca’s donor family enough, it’s hard to find the words to say,” she said. “Rebecca’s life has changed so much since she received her gift. She is so much more comfortable and confident in herself. She is less tired – although she enjoys a lie-in as much as any teenager – and goes out a lot more.
“Her abdomen was so large before and afterwards she had a completely different body and is now more comfortable in herself.”
Nicola has thrown herself into fundraising for the charity, completing a sponsored skate across the Forth Road Bridge last year and will now take on a five-mile running challenge at the Simplyhealth Great Edinburgh Run on April 23.
The run will be part of the charity’s Big Yellow Friday, where Nicola and friends will dress-up in yellow costumes for the run.
Nicola, who is also mum to Megan, 16, Bailith, four, and four-month-old Lucas, added: “I decided to support a wonderful charity that has helped Rebecca for all of her 18 years. We can’t thank them enough for all of their help and we know that some of the funds we raise at the Simplyhealth Great Edinburgh Run will help other families be supported during their liver journey.”