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Battling Bethany's fight for life
EXCLUSIVE by VICKI ROBINSON Brave Bethany Salmon faces a daily battle for life – after a inheriting a deadly legacy from her parents.
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.
Unknown to them, mum Samantha Marston and dad Tony Salmon were both carriers of a potentially fatal gene. The odds of them meeting and having a child with the disorder was almost a 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 you 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 since but she's a little fighter."
Drugs
Bethany was just 15 days old when she was diagnosed with Progressive Familial Intrahepatic Cholestasis (PFIC) – a disease suffered by just 20 children in the UK and which causes total liver failure.
She spent most of her first year in hospitals in Leeds and Dewsbury and until recently was still a regular inpatient.
Although she is now back at home in Thornhill, Dewsbury, the youngster survives on a daily cocktail of 19 drugs which help her body function to some degree of normality.
As she gets older the condition will worsen further still 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 could be taken from Tony and given to her. But the operation is considered a last resort and could actually be more risky for Tony than Bethany.
Donor
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 is 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 OK."
The couple have another daughter, Eloise, 18 months, who is so far proving to be free from the illness.
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 all right.
"Whatever happens, we just thank our lucky stars that we have two gorgeous daughters."
To become an organ donor log onto www.uktransplant.org.uk or call the NHS Organ Donor Line: 0845 60 60 400.
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Friday 25 May 2012
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