The three-year-old suffers from a rare genetic liver disease and will need a transplant if she is to live past her 10th birthday.

Unbeknown to parents, Samantha Marston and Tony Salmon, they were both carriers of the gene. The odds of them meeting and having a child with the disorder was almost one million to one.

Samantha, 30, said: A few days after Bethany was born we were told she could die at any time. It was really hard to take, knowing that in some way you passed this illness on to your daughter. If either of us had had children with anyone else they would have been perfectly fine.

“Despite her illness, and how she suffers, we’re still glad we had her. She has been through a huge amount but she’s a little fighter.”

Bethany was just 15 days old when she was diagnosed with Progressive Familial Intrahepatic Cholestasis (PFIC) – a disease affecting just 20 children in the UK and which causes total liver failure.

hospital

She spent most of her first year in hospital in Leeds and Dewsbury and until recently was still a regular inpatient.

Although she is now back at home, she survives on a daily cocktail of 19 drugs which help her body function to some degree of normality. As Bethany gets older her condition will get worse and ultimately her only hope will be a liver transplant.

Dad, Tony, 46, is a match with his daughter and, if no donor is available, could undergo an extremely rare live liver swap operation.

Because of Bethany’s size, just a portion of Tony’s liver could be taken and given to her.

The operation is considered a last resort and could actually be more risky for Tony than Bethany.

Bus driver Tony said: “I’d hope that when it was time for the transplant, a donor would be available. But if there isn’t one, I would do it. She’s my little girl and you would do anything for your children.”

Samantha added: “We don’t look to the future too much. We tend to live in the here and now, because we don’t know what tomorrow will bring. But as long as Bethany is there with us, that’s all okay.”

The couple have another daughter, Eloise, who is 18 months-old and so far appears to be free from the condition.

Tony said: “We took a chance on having another child. Of course we didn’t want another child to be poorly but we hoped lightning wouldn’t strike twice and so far everything seems alright.

“Whatever happens we just thank our lucky stars we have two gorgeous daughters.”

To become an organ donor log on to www.uktransplant.org.uk or call the NHS organ donor line: 0845 60 60 400.