Little Niamh Coyne underwent the first of many operations when she was just a few days old for a rare bowel condition and did not spend a night at her Sheffield home for the first two years of her life.
Complications left her with a failing liver and last year a national appeal was issued for a new organ after she was given just a few weeks to live.
A donor liver was found but following multiple further complications her parents have now been told she needs another organ and help from a new donor. Her mother Hannah Wilkins, 24, said that even if a match were found, there is only a 50 per cent chance she would survive surgery and another 50 per cent chance she would live through the following year.
"It is gutting because she was so poorly and even after all the medicine she has every day and the transplant last year she is still in this situation," she said.
"I know that if she hadn't had all of the tiring treatment and medicine then she wouldn't be here today and we wouldn't have had another 18 months of fantastic memories but it is unlucky.
"She is quite fed-up of hospitals now and when we say we are going to Birmingham's Children's Hospital she says 'Oh no' because she knows she has to have blood tests. We have to stop and remind ourselves that we are doing this for her and not ourselves because when we see her running around and being a normal three-and-a-half-year-old it makes it all worthwhile."
Niamh is given some form of medicine 33 times a day and has to wear a special backpack 20 hours a day which delivers food directly into her stomach.
Her mother said they make her time out of hospital as fun-filled as possible with visits to the cinema, seaside or the park.
"It might not sound much to you and me but she loves to be outside. This is the first real summer she has got to enjoy herself out in the garden," she said.
"Now we just have to go with it and just hope that somehow, something will come."