Joe Skerratt was just three weeks old when he was rushed to hospital one morning.
An x-ray showed his heart was severely enlarged.
Joe's health deteriorated rapidly in December 2009 and fearing the worst, his parents had him christened.
By December 2010 Joe began showing signs of heart failure.
He was short of breath, puffy in the face and had lost his usually healthy appetite.
Doctors confirmed that he would need a transplant.
A few days later, Joe had a rapid decline in health and suffered two cardiac arrests in hospital.
His mum Rachel says they had no idea if he would survive.
Joe was transferred to Great Ormond Street Hospital, where he suffered another cardiac arrest.
Eventually he was stable enough to be attached to a Berlin heart, a machine the size of a small chest freezer, which supports the work of the heart.
He spent a record 251 days kept alive by his artificial heart, longer than any other child in Britain.
Joe's mother Rachel says he went through so much in such a short space of time.
But on day 251 Joe's parents received the call they had been waiting for. They had been offered a heart for their son.
The operation was a success, but Joe still had to spend four days in intensive care before he could have his chest closed safely.
Joe's case is being highlighted to raise the chronic shortage of organs for children in the hope that people will sign up to the NHS donation register.
Joe is fully aware of what has happened to him.