A bereaved couple say they could not have coped with the loss of their young daughter without support from a children's hospice.

Gary and Kelly Munden's daughter Annabel had Cockayne syndrome, a very rare genetic condition that only affects two to three people per million worldwide.

It meant she was in and out of hospital, while her parents were told she would probably not make it past her third birthday. In June last year Annabel made her final visit to the Queen Elizabeth Hospital in King's Lynn, where she died at the age of five.

Mr and Mrs Munden, from Terrington, near King's Lynn, asked for all three of them to be transferred to the nook, East Anglia's Children's Hospices' hospice in Framingham Earl, near Norwich, to spend some time with Annabel. EACH counsellor Amy Brown supported them.

Mr Munden said: ""I really didn’t want to go home after Annabel passed because we left for the hospital in such a rush everything was just left. Her bed was literally as we’d left it and I didn’t know how I’d cope with that."

Eastern Daily Press: Annabel Munden before she died of a rare conditionAnnabel Munden before she died of a rare condition (Image: EACH)

Mrs Munden added: "The nook was such a safe haven for those 48 hours. It was our final time to spend together, as a family.

“From the moment we got to the hospice Amy was there. She helped us make memories even after Annabel had passed."

This week is Children's Hospice Week. The theme is Pushed to the Limits, reflecting how families who use children’s hospice services have been pushed to theirs.

EACH has continued to support the Mundens through virtual one-to-one and group counselling.

“EACH are such an amazing support for families when a child is still alive, but even after a child has passed they’re still there for as long as you need them,” said Mrs Munden.

Tracy Rennie, EACH's director of care, said: “Children’s hospices are charities and while we receive some funding from the government we’re almost entirely dependent on the generosity of our supporters from communities across East Anglia. We simply couldn’t do what we do without those who care deeply about how families of children with life-threatening conditions are pushed to their limits.”