It was the determination of one woman from Beddau combined with the generosity of the people of Wales that led to the creation of Tŷ Hafan - Wales’ first children’s hospice.
Now, as it celebrates its 15th anniversary, the hospice can look back at 585 life-limited children, young people and their families that their dedicated staff have been able to help so far.
Jacob Ferriday from Barry was only a baby when he first visited Tŷ Hafan. In fact he was referred in 1998, before the hospice was even built.
One of seven children, Jacob, 17, suffers from the condition encephalopathy which is a brain disorder and means that he has profound learning difficulties, development delay and epilepsy.
His mum, Sally, describes the significant difference Tŷ Hafan has made to her family over the years. She said: “When we first visited the hospice I didn’t know what to expect. It was hard for me to leave Jacob because he was very young and I was not used to being apart from him. I was reassured by the care team and very soon, felt completely at ease. I instantly felt the pressure lift. I hadn’t realised how tired I was or quite how much care I’d been giving until I had that break.
“We very much rely on the short break care as it can be incredibly exhausting looking after Jacob and six other children. Jacob loves staying at the hospice and has made so many wonderful friends there. He has changed an awful lot since his first visit as a baby – he is now a lovely young man who brings a lot of joy to our family.
“He has had a lot of surgery over the years and sadly, there is nothing more that can be done for him. Managing his pain and making sure he’s comfortable is the most important thing now.
“If I was to describe what Tŷ Hafan provides in one word, it would be ‘support’. They are always there for us, whether that be at the hospice, in hospital or at home.
“Looking back, I really don’t think we would have coped without Tŷ Hafan. They have been a godsend and we are incredibly grateful for everything they’ve done over the last 15 years.”
Recognising the lack of provision for life-limited children and their families inspired Suzanne Goodall’s 11 year fundraising campaign to build the stunning hospice overlooking the Bristol Channel in Sully.
Research into the need for a children’s hospice established that there were as many as 300 children in Wales that could benefit from the service.
Suzanne said: “My retirement was put on hold when I felt driven to campaign for a children’s hospice in Wales to provide expertise and loving care to the children who had only a short life. My aim was to provide support and short break care to hard-pressed families, coping with unimaginable stress.
“I had no doubts that the people of Wales, understanding the situation that these children and families faced, would open their hearts and give generously. My faith was justified. In 1999, after 11 years of hard work, Tŷ Hafan opened its doors and we saw the first families cross the threshold. Tŷ Hafan’s hospice truly is a haven.”
Supporters raised an incredible £2.6m to build and equip Tŷ Hafan which finally opened its doors on 25 January 1999.
Celebrating its 15 year anniversary is an important milestone for the charity as it continues to care for more and more life-limited children and their families each year. Since opening, the charity has extended its services beyond short-break care and offers its support in communities across Wales.
The annual cost to run the service has risen to £3.5m and the charity continues to rely heavily on the generosity of the public, its corporate sponsors and volunteers to provide its services.