STEPHEN Hill was the picture of health when he gave this heart-warming smile, but what lay beneath his toddler's twinkle was the beginning of a swift and cruel disease.

Maria and David Hill's treasured photograph, kept in the living room of their Leominster home, was taken in the early stages of their son's tragic illness.

Stephen was aged just three when he developed a mystery problem that affected his foot.

The apparently normal and healthy little tot, who had loved Barney the dinosaur, never recovered after tripping over on his ankle, and died before his seventh birthday.

Doctors thought his limp would pass but when he reverted to crawling it became clear he had developed the debilitating dystrophy illness known as MLD.

"He went from being a normal three-year-old to not being able to do anything when he passed away. He couldn't speak, sit or eat, he was incontinent and was fed through a tube into his stomach," said Maria.

The 26-year-old and husband David, aged 27, who drives a school bus, provided 24-hour care for Stephen over the next four years.

"He never really grew out of nappies. He slept with us in our room because he had to be fed through the night and he used to bring up bile which could burn his face," said David.

Happy child

It was Stephen's paediatric nurse that mentioned Acorns. At the beginning the little boy stayed at the charity's children's hospice in Selly Oak for a couple of days at a time while the whole family took time out.

As his condition worsened he would take longer breaks away from home and in the end was staying for a week.

Stephen, who bravely remained a happy child throughout his illness, had enjoyed the home from home where he could relax his tired body in a hydrotherapy pool and meet other poorly children.

Had it been closer to Herefordshire Stephen could have gone more often. David and Maria can't praise the charity's work enough and will do all they can to support the proposed new Worcester hospice for life limited children in the three counties.

"Any parents who can get their children there should, because it helps enormously," said Maria.

When Stephen died the family was offered bereavement counselling and special books were sent for their other children, Sophie 12, Natasha five, Chloe four and Nicole aged two.

Nearly two years after Stephen's death Acorns is still in touch and the family receives a visit about once a month.

David and Maria say there isn't enough respite care available for life-limited youngsters and urge people to get involved with fundraising for the Three Counties' hospice, due to be completed in 2004.

David's mother, Carol Hill, is currently organising a big bingo event to raise cash and David is talking to fundraising organisers about how he can help.

Since the £4 million fundraising appeal for the Three Counties' hospice was launched two weeks ago, groups and organisations across the county have pledged their support.

Anyone who would like to help can contact Acorns community fundraising co-ordinator, Fran Winterbourn, on 01905 767676.