TY GOBAITH Children's Hospice has demanded fairer funding from the Welsh Government, ahead of the elections.

North Wales-based Tŷ Gobaith and South Wales-based Tŷ Hafan, provide respite and palliative care for more than 400 families with terminally ill children but the two hospices receive less than 10 per cent of their annual funding from the Welsh Government.

Children’s hospices in England receive 21 per cent government funding, Northern Ireland 25 per cent and Scotland 50 per cent.

The hospices have joined forces to ask candidates from all parties in the forthcoming Senedd elections on May 6, to publicly pledge their commitment to the establishment of a sustainable and fair funding system that children and families can rely on. They have called their proposal a ‘Lifeline Fund’.

One of the children who rely on hospice care at Tŷ Gobaith is five-year-old Bedwyr Davies from Llanrwst.

Bedwyr was diagnosed with the genetic condition Coffin-Siris syndrome two years ago, a condition which causes significant learning disability and is extremely rare with just 200 children diagnosed worldwide. He is also tube fed, has respiratory problems and cannot speak.

Mum Nerys said: "It’s the little things you really look forward to that other people can take for granted, like being able to sleep at night, or sit down and eat a meal in peace even if it is just beans on toast, or just to have a cup of tea.

“It’s horrific going without sleep. Bedwyr has always co-slept with me, which means I don’t get much sleep at all. If anything happens it is always in the middle of the night. Emergencies and rushing to hospital always happen at 2am in the morning, never in the afternoon.

“Respite is so important for us as parents physically and mentally because without it families end up in crisis.”

Andy Goldsmith, Tŷ Gobaith’s chief executive, said: “Our proposal is to move towards a sustainable model of funding that is more aligned with children’s hospice charities in other UK nations.

“This funding would give the children’s hospices in Wales confidence to sustain, plan and expand our services to better meet the need of all children with life-limiting conditions and their families across the country, in turn addressing Wales’ ambition to be a ‘compassionate country’."

Hope House Tŷ Gobaith care for babies, children, young people and young adults up to the age of 25 years who have life-threatening conditions and are not expected to live beyond 25 years of age.

The help is available to children and families living in Shropshire, Cheshire, Mid and North Wales.