Baby Gabriela Filarowski has just months to live – with a heart transplant her only hope of survival.
The one-year-old is seriously ill with a rare heart condition.
Now her parents Andrew and Angela Filarowski have launched a desperate plea to urge bereaved families to consider donating their child's organs.
Andrew said: "You cannot ever imagine what it's like to wonder when you put a child to bed whether they will still be alive the next day.
"She's unlikely to die overnight, we know that, but every day, every minute there's a chance that Gabrysia will go into heart failure."
Gabriela, known as Gabrysia, was born with the rare defect Double Inlet Right Ventricle.
In her short life the tot has undergone open heart surgery twice at Birmingham Children's Hospital.
However her heart function remains significantly impaired and she's on 25 medicines a day.
Each week her family take her from their home in Horsforth, Leeds, to Newcastle'sFreeman Hospital, the northern centre for children's heart transplants.
"In October, when she was first having her assessment at Newcastle, they told us they would give her 12 months to live," her mum Angela, 31 and a deputy headteacher, said.
"On Friday her status on the transplant list was upped to 'urgent'. We are just waiting now."
Initially medics predicted that because of her previous operations, Gabriela's body would reject 95 per cent of donor hearts. With the already scarce number of donor organs, that would seriously reduce her chances of a successful transplant.
But in January she had pioneering treatment usually used for cancer to cut her numbers of antibodies. Now her chances are improved but she still needs a donor.Her parents, who also have a son Thomas, 11, and daughter Ania, nine, want more people to think about organ donation.
"The number of children waiting on the heart and lung transplant list is quite large," Andrew, 42, said. "A lot of them don't get their heart transplants and die while on the list."
He said medics should raise the issue of donation with parents who lose a child: "It sounds callous but it does happen, children do die every day and maybe the question is never asked. Even if it does not help Gabrysia, maybe further down the line there's a set of parents who are not going to go through this."
* Sign up to the organ donor register by calling the Organ Donor Line on 0845 60 60 400 or visit:
www.uktransplant.org.uk