Little Evie-Lilly Graves has had one of the toughest starts to life that anyone could imagine.
She has spent most of her first eight-months in hospital while her doting parents Danii Turek and Antony Graves feared the worst.
But they are determined to give her the happiest life they can – and help other parents going through the same experience.
When Evie was born, Miss Turek and Mr Graves, from Crofton, had no idea there was anything wrong with her.
After she struggled to feed, doctors at Pinderfields Hospital diagnosed her with a heart murmur.
Mr Graves, 34, of Middle Lane, Crofton, said: “The doctors didn’t seem too concerned, we were told it was nothing to worry about but something really didn’t feel right.”
A week later Evie was admitted to Leeds General Infirmary where an ultra sound revealed she had an open duct in her heart that should have closed on birth.
Surgeons were set to operate the next day but it was postponed when the government suspended operations at the childrens heart unit due to concerns over safety.
Evie’s condition deteriorated rapidly and the family travelled to Leicester for the operation.
Mr Graves said: “We were on cloud nine, we thought our baby was healthy again.”
But the next day their hopes were shattered when they learnt that Evie had a number of fits and seizures in the night.
Miss Turek, 23, said: “We were told she had suffered significant brain damage. Two parts of her brain were badly affected – her vision and movement. The consultants could not tell us what our daughter would and wouldn’t be able to do or see.
“That is the hardest thing. We can accept our daughter is brain damaged. But we cannot accept not knowing what her future holds.”
Evie will need further operations as she gets older.
Mr Graves said: “Until then our daughter is a ticking time bomb – there is a high risk she could have a stroke at any time. But to admit defeat will not help our little girl.
“We want to give her the most enjoyable and happy life even if her life is short.
“We know how hard it can be dealing with something like this and if there are other parents out there going through it we want to offer our help and support.”
A fundraising night will take place at The Royal Oak, in Crofton, on December 14, with an auction, buffet and disco.
To donate a prize, help out with other fundraising events e-mail email@example.com