Little Harley had suffered problems with his bowel since birth but was on the cusp of a relatively straight-forward procedure to bring that to a close when he suddenly became ill and died.

At first no-one could explain what had happened but after an agonising wait of more than a week of uncertainty, his parents have been told a fast-acting virus had developed into pneumonia and attacked their little boy's heart and lungs.

Doctors have said Harley's condition made his immune system weaker than an average child.

Struggling to come to terms with her loss, mum Charlene Hyam (24) said: "I know really deep down what's happening but I can't really believe what's happening."

Harley was born five weeks early and suffered with a bowel condition known as NEC.

He was seriously ill when the condition first surfaced and spent six weeks in hospital in Norwich after emergency surgery to fit a colostomy bag.

But since then his health had been improving and Harley was due to have the bag removed on Wednesday, April 30. Instead, on that night he was admitted to hospital, seriously ill and dipping in and out of consciousness and died there at 5.25am the next day.

In the previous few hours he had stopped breathing twice, but doctors had fought and won to bring him back. On the third occasion, they got him back for 30 seconds, but little Harley could take no more.

Devastated and exhausted Miss Hyam and partner Stewart Rogers then spent heartbreaking final moments with their son, bathing and dressing him before spending an hour lying with him on the bed.

The couple, of Saddlebow Road, Lynn, are now battling to stay strong for Harley's elder sisters – Kya (six) and Latia (three).

Lynn's St Michael's Primary School pupil Kya sometimes sits holding a picture of her little brother and gives him little kisses.

Stewart (25), a worker at Eriks UK on Hardwick Industrial Estate, said: "He was such a happy baby, always smiling. We are so used to him being in and out of hospital, at the moment it just feels like he is still there and we are waiting for him to come home."

Harley's funeral was due to have been held in Gaywood today (14). The family requested donations for Norfolk and Norwich Neonatal Intensive Care Unit, where Harley was looked after following his bowel surgery.