SISTERS Kelly and Alison Hibbard were born with a rare genetic disorder that meant they would not live to see adulthood - their Hereford parents have told how the Acorns Children's Hospice changed their lives.

Pauline and Dave Hibbard from Penhaligon Way said they could not have coped without the charity's help.

They had spent 11 years caring for their elder daughter Kelly who was diagnosed with the debilitating Niemann pick type C disease at the age of eight.

Devastatingly, the little girl lost her ability to walk and talk. She became incontinent and physically disabled, dying at the age of just 19.

Ali was only a toddler when they noticed she found it hard to balance on her bike. They recognised the telltale signs of her sister's condition. This time they had heard of a special charity that could help their daughter, and themselves, called Acorns.

Aged four, Alison made her first trip to the Acorns Children's Hospice in Birmingham. What the family was amazed to discover was a home from home, where staff would do all they could to help and the atmosphere was happy and loving.

The support was appreciated more and more as 'Ali', fondly remembered as 'Daddy's girl' by Dave, became increasingly disabled.

Stopped breathing

"She couldn't eat and she was incontinent and we had to keep an eye on her in case she had a fit. Sometimes she stopped breathing and then just came back."

During the last heartbreaking year of her life, Ali spent several happy breaks at Acorn's other hospice at Walsall, where there was a special unit for teenagers.

"She loved going there. She joined in with anything going and liked being pampered. She liked having her hair washed, she had massages and there was a sauna and spa bath. At night when the little ones were in bed, she and the helpers would watch a video," said Pauline.

It was when Ali was at Walsall that Pauline and Dave received what they call 'the dreaded phone call'. Their daughter died last November aged 20 - at her funeral £200 was collected for Acorns.

The memories of their daughters are treasured and it is with much comfort they remember the enjoyable breaks Ali had with Acorns. The couple had hoped their daughter would be able to enjoy the same care nearer home at a new Acorns hospice planned for Worcester.

l The charity's third hospice for life-limited youngsters will provide respite care and support for families in the three counties, including up to 43 children in Herefordshire who will not live to see their 20th birthdays. It is also some consolation that they can see the dream for the new hospice coming true, and urge people to do all they can to support it.

"Now we have up and down days, but if our story helps others have a break, that's important. Our message to fundraisers is 'get up and go' because Acorns is needed urgently," said Pauline and Dave.

Acorns fundraisers have launched a £4 million appeal to pay for the Three Counties' hospice, which should be up and running in 2004. Anyone who would like to help, can contact Acorn's community fundraising co-ordinator, Fran Winterbourn, on 01905 767676.