Luke died of Aids as he lay on the sofa. He was nearly two years old: An HIV mother grieves for her child

CHRISTMAS 1993 was extra special for Sally and her husband, Doug. They knew it was the last one they would spend with their son, writes Liz Hunt.

'It was over the top in every way, but we wanted that for him and us,' she says.

He began to fail early in the New Year. His arms and legs became stiff and his fists clenched tight as infection spread through his brain; he could no longer sit up or roll along the floor.

The day before his death, Sally took him on a last tour of their home. 'I carried him into each room and I told him what we'd done in there together, what we'd played. I told him that his daddy and I loved him very much and that we wanted him to stop fighting and rest.'

Luke died of Aids at 5.25pm the following day as he lay on the sofa in their front room. He was one month short of his second birthday.

Sally, 36, a former underwriter who lives with Doug in west London, had devoted herself to caring for Luke at home and giving him the best life possible. When he died she not only had to face his loss, but for the first time come to terms with her own uncertain future as a woman with HIV.

She believes her first husband infected her, but she does not know when. They were married for 13 troubled years and she knew he had had affairs.

'Idon't know where he is now and I don't care, but if I saw him in the road I'd run him down. That is how I feel,' she says.

Sally has agreed to talk because she knows now that HIV doesn't just happen to 'other people'. It happened to her - someone who had never used drugs or slept around - and is happening to other women every day.

She wishes she had known before Luke's birth that she was HIV-positive, because perhaps there was something that could have been done. If only she had had a Caesarean section, or hadn't breast-fed him, he might have escaped. The guilt nags away at her.

Luke was born on 24 April 1992, small but apparently healthy. Sally breast-fed him for the first two and a half months but then began to worry because he was not putting on weight.

'I went to five GPs but they said I was an over-anxious mother. I used to sleep with my hand on his stomach just to see if he was breathing. He still looked like a new-born baby. You could see his ribs and his heart beating through his skin.'

A month later, Luke was diagnosed as having a rare form of pneumonia. When doctors asked if they could do an HIV test, the couple agreed without really thinking about it. Next day a doctor told them that Luke had Aids, that Sally was almost certainly HIV-positive, and that Doug might be too.

'My whole world collapsed in a few minutes,' Sally says. 'With Luke and Doug I had been really happy for the first time in my life and then everything was just grabbed away. The minute he told us I knew it was my first husband.'

Sally tested positive as expected, but Doug, her partner of five years, had not been infected. Luke was moved to the Paediatric HIV Unit at St Mary's Hospital where the doctors said they feared Luke would not reach his first birthday. His recovery from the initial bout of pneumonia took many weeks but slowly his lungs improved, and by November he was ready to go home.

Sally was determined to prove the doctors wrong and keep him out of hospital. It was an exhausting challenge because her son needed 24-hour care which, she says, she could not have managed without the St Mary's team, who were in regular contact.

She concentrated on getting his weight up, and feeding him could take hours but the rewards were immense. Luke developed into a 'real little lad' who enjoyed life.

In many ways Luke was lucky and escaped some of the worst ravages of Aids. He managed to keep food down, he didn't suffer from diarrhoea and there were no lesions on his body. But when he stopped smiling in the early spring of this year, Sally and Doug realised they were going to lose him soon. They wanted him to die at home and worked with doctors to keep him comfortable and free of pain until he died.

For two months after the funeral Sally did not leave the house. Everything she did and everywhere she went she was reminded of Luke.

She still cannot go into the bedroom where his clothes and toys are. 'When you've lost a child like that, who was so loving and cheeky, you miss him so much,' she says.

Although her health is good, she talks easily about her own death and has told Doug that she does not want to be nursed at home but to go to a hospice. Some of her time is spent with other mothers, helping them to come to terms with losing a child to Aids.

'Every day with Luke was a bonus. He loved music and he loved his books and being read to. He was very affectionate. He always slept with us. That time with him was very important. People ask me if I wish he had died right at the begining but I don't. I have no regrets.'

The family's names have been changed. CWAC (Children with Aids Charity) c/o Jo Dodge, 6th Floor, Queen Elizabeth the Queen Mother Wing, St Mary's Hospital, London W2 1NY.

(Photograph omitted)