VIP day for Goring boy Orlando

Orlando, of Chesterfield Road, turned four on Thursday, April 5 and was taken with his family by limousine to Drusillas Park in East Sussex to open a new Thomas the Tank Engine attraction.

The trip was arranged by the Anne Bickmore Children's Fund, after it learned his rare heart condition had taken a sudden turn for the worse.

His mother, Ann, 37, said: "We had a wonderful time, it was really lovely.

"Orlando was treated like a VIP all day and he really enjoyed himself, especially seeing Thomas the Tank Engine."

Orlando was born with aortic stenosis, a condition causing a thinning of the major heart valves, which could cause his heart to stop, known as cardiac arrest, at any time.

He had been doing well, but at an appointment at the Brompton Hospital in London last month, Ann and his dad Clay were told his condition was now critical and he needed another operation.

It had been hoped he would be 13 before he needed to have the surgery, as it is not usually performed on children so young.

Ann said: "At Christmas, he couldn't have been better, but in January he went downhill very quickly and now we have to face the prospect this could be his last birthday. It's a horrible shock.

"I really don't want him to have the surgery. I've really cried about it, but if he doesn't, I'll lose him anyway.

"The waiting is like having an axe hanging over you, you're always just waiting for it to fall."

His condition is so rare, Ann said only one in "billions" have it.