Watch ITV Cymru Wales' report by Kelsey Redmore
Hospices are calling on the Welsh Government to increase funding of palliative care for children in Wales.
Tŷ Hafan and Tŷ Gobaith together - provide care and support for more than 450 families each year in Wales, but receive less than 10% of their funding through state sources.
This compares with 20% in England and around 50% in Scotland.
It is estimated that there are around 3,600 children in Wales living with a life-limiting condition. Approximately 800 of these children have ongoing palliative care needs which require contact with hospital services.
Andy Goldsmith, Chief Executive of Tŷ Gobaith, explained that both children hospices are currently only able to meet the needs of half of this population.
Hey says that additional funding would allow them to reach more children and offer more care services.
Micaela Turner, from Cowbridge, knows all too well about the importance of children's palliative care services after her 11-year-old son, Cai passed away at a hospice earlier this year.
"Cai absolutely loved coming to Tŷ Hafan", she said.
"The biggest thing for me is when we used Tŷ Hafan as a hospice for end of life care, Cai had been sleeping in the hospital for quite a long time on a ventilator and as soon as he arrived through the Tŷ Hafan doors, he woke up.
"It was almost like he knew he was home, surrounded by people who loved him and cared for him... It's somewhere that is very very special to us."
Maria Timon Samra, the Chief Executive of Tŷ Hafan, said that they were "desperate" for a funding settlement from the Welsh Government.
She said: "We're really struggling now because our cost base has gone up. So we're really at a point where we desperately need sustained funding settlement to help us plan forward and to make sure we're here for the children and the families who need us."
Peredur Owen Griffiths is a Plaid Cymru member of the Senedd for South Wales East and he's been campaigning for better funding for palliative care for children.
"I spoke in the Chamber a little while ago," he said.
"We want to see after the review is done that the funding actually is better here in Wales so we're waiting here with baited breath for the government to put into action what they've said that they're going to do."
The Welsh Government has conducted a review into hospice funding in Wales and will reveal the recommendations shortly.
A Welsh Government spokesperson said: "Hospices provide incredibly important services and we recognise the enormous support they provide to patients, families and carers. Work to review hospice funding is progressing well. The report is currently being finalised and recommendations for future funding are scheduled to be available shortly.
"We continue to invest more than £8.4m every year to support specialist palliative care services across Wales. "We have also allocated £12.3m of emergency funding to hospices through the pandemic to protect core clinical services and to strengthen bereavement support. More than £2.1m of this funding has been allocated to support Welsh children's hospices."