Grace Mai Hunter-Sapio was born on September 3, 2013, to Dan Sapio and Cara Hunter.
She was born with a rare heart defect that Dan, 27, said affected only one in 5,000 new-born babies.
She had hypoplastic left heart syndrome – where the left ventricle of the heart does not develop properly so is much smaller than usual.
“Her heart had become far too weak and she felt it was time to go,” said Dan, from Chichester.
His daughter passed away last Thursday, leaving the family devastated.
“When she was at home it was laughs, fun and games,” said Dan. “She bounced off her brother and he bounced off her.”
In her young life, Grace spent a great deal of time being cared for at Southampton General Hospital.
Dan praised the care she received there, as well as that of the Sussex Snowdrop Trust, providing care at home for children with life-threatening conditions.
“Without them I think we would have cracked as a family a long time ago,” he said, saying their support for the family had been invaluable.
Nurses from the trust came out to double-check Grace and help administer medicines and care for her.
However, so much of the family’s time since Grace’s birth has been spent at Southampton.
“It had become a normality,” said Dan. “Now we’re at home it doesn’t feel like home because in the end my home was Southampton General Hospital.
“That’s all I’ve known. I’ve become immune to my surroundings. I’m still struggling now.”
There was not time for many landmarks in Grace’s life, but at the end of 2014 she was able to spend her first Christmas at home.
“It was good to have her home for Christmas. She loved it and it was quite a nice moment,” said Dan.
The family were already looking forward to their daughter’s second birthday in September.
Dan said Cara had been going through the drawers and found the party invitations already prepared, as well as a strawberry costume their daughter had not been able to wear yet.
Knowing how serious Grace’s condition was when she was born at St Richard’s Hospital, Dan said he had not initially wanted to get too attached as he knew how painful it would be.
However, when she started speaking she was always calling for ‘dad’ and asking for him.
“She was my daughter and I loved her to bits,” he said.
Despite spending so much time in hospital, Grace still made an unforgettable mark on the family.
“It was a good experience for her when fit and well. Even when she was ill, she didn’t let anything bother her,” said Dan.
As they prepare to say goodbye to Grace, the family are preparing for a new arrival, with a younger sister for four-year-old Harvey and Grace due in September.
Dan finished by saying: “It would be quite nice if you wanted to write: sleep tight angel, taken far too soon. Love mummy, daddy and Harvey.”
A funeral takes place at 11.45am on Monday at Chichester Crematorium.
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