With her tiny fingers clutching her mother's hand, Lottie Bryan-Edmonds clings to life in a Birmingham hospital.
The four-week old baby is desperately in need of a new liver and will die within weeks unless a suitable organ is found.
Doctors and Birmingham Children's Hospital are doing all they can for Lottie, who was born seven weeks premature.
Save our baby: Julie and Chris look down at Lottie who has just weeks left without a transplant
But the wait for a transplant is agonizing for parents Julie and Chris. Julie said: 'We are on a knife edge because no one can say what will happen and if Lottie will be okay. She only really has a month to find a liver and it is out of our control.
'It may be too late for us, but if telling our story helps one other person, it will be worth it.'
Lottie was born with rare condition neonatal haemochromatosis, when toxic levels of iron accumulate in the baby's liver while developing in the womb. Her only chance is a transplant.
Wires protrude from every pore of the tot but within weeks this form of treatment will not be enough to keep her alive, no matter how hard the doctors and nurses try to save her.
She is top of Britain's 'super' transplant list, which is reserved for the most urgent cases.
But because Lottie is so small she needs a liver transplant from a child, meaning neither her parents could acts as live donors.
Chris, a 47-year-old financial adviser, said: 'These past eight days have been agonizing as her liver is in a very poor condition and is not going to recover.
'Because Lottie is so tiny, she needs part of a liver from another child as the minimum doctors can take from a liver is 40 per cent and it will be too big from anyone older.'
With only a quarter of Britain's 62 million people agreeing to become a donor, she is a symbol of the failure of the NHS to attract more understanding and acceptance of transplantation.
Julie, a 39-year-old sales manager, said: 'I had no problems with the pregnancy so all this is a complete shock.
'We can't do anything. All we can do is sit by Lottie's bedside.
'You don't realize the importance of organ donation until you have felt it, touched it,' added Julie, who also has a 22-year-old son from a previous relationship.
'It's hard to deal with a death but, out of something monstrous, there can be joy for other people.'
Chris added: 'Every moment, Julie and I have a moment of euphoria that Lottie hasn't died despite being one of the most critically ill babies in the country.
'But then we have the anxious wait and the machines will start bleeping with a problem.
'It is an unbelievable rollercoaster of emotions, it's ghastly.'
Lottie, who is Chris and Julie's first child together, was born on July 6, weighing just 4lb 1oz.
She was transferred to Birmingham as it is one of the most specialised liver units in Europe.
Julie and Chris, who live in Torquay, have now experienced both sides of the coin f organ donation as 15 years ago, Julie's 26-year-old cousin Lee Field died from an aneurism and his death changed the lives of seven people.
Lee's parents Maggie and Dave allowed doctors to give a nine-year-old girl Lee's liver, a 32-year-old man with cystic fibrosis a new pair of lungs, a 62-year-old man a heart, a 47-year-old man and 33-year-old woman each had a kidney and a 28-year-old man and a 57-year-old woman both received a cornea from the eye in order to see.
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Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves
Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You