Michael was born on the 23rd November 1991 by an emergency caesarean. The scan I had during the pregnancy had shown that nothing was wrong. Once he was born, he was rushed straight to Special Care where had lots of fits. He was born in the afternoon and they still did not have them under control at 9:30pm.

I could not see him until the next day - they gave me a photo to look at.

The next day he was christened as he was not expected to live long at all. That night he was due to die, but he found his own level, and pulled through - at this stage he was detached from all machinery. The hospital gave us our own room, and after two weeks of emotional ups and downs, we took him home. We could not believe it - we had a baby for Christmas!

He stayed at home most of the time, and it was not until he was three months old that he visited hospital - more to give me a rest than the fact that he was ill. He was on phenobarbetone for fits, and it was at this stage that he was given a drug to stop his muscles going into spasms (these caused him to scream a lot!).

When he got to five months old, things got worse, and I only had him at home during the day. We had to use a suction quite regularly. Five and a half months later he died in his father's arms of Bronchopneumonia on the evening of 14th May 1992.

Michael has taught me and my husband so much of what life is about, what love is, a tremendous amount of pain, but we will never forget him. Someone said to me after he died: "…this is not the end - it is the beginning". You really have to have lived through it all to know what that means, and we're only just "beginning" to.

Julie and Bob - and Emma and Thomas Kingshott England