Every week, parents in Wales are told the devastating news that their child is likely to die in childhood.
Thankfully, Tŷ Hafan is there for life-limited children and their families, helping them make the most of the time they have left together.
With more and more families needing Tŷ Hafan’s support, its annual costs are also rising. The charity needs to raise £3.7m each year to provide its services compared to just £1m when it started in 1999.
Alice Hicks and her parents, Ian and Hannah, are one of 262 families currently supported by Tŷ Hafan. They are helping with the charity’s Precious Moments Appeal and their story will be shared with more than 40,000 people across Wales receiving letters from Tŷ Hafan this week.
Like most new parents, Hannah and Ian Hicks couldn’t wait to go for their 20-week scan. But all that excitement turned to anxiety when the midwife went to fetch the doctor. They were told the most devastating news any parent can hear – their unborn daughter had a condition that meant it was very likely she would die in childhood.
“We left the hospital feeling like our world had fallen apart,”
“One minute we had been watching our child moving around on the monitor. The next, we were being told we would never see her grow up.”
10-month-old Alice was born with hydranencephaly, a central nervous system disorder characterized by an enlarged head and neurological deficits. Her family was forced to prepare for the worst as she spent her first 15 days fighting for her life in the neo-natal unit at the University Hospital of Wales.
“As it became increasingly clear the doctors could do nothing more to help her, they suggested we took her for end of life care at Tŷ Hafan,” said Ian.
“Being told by our doctors that we would have to go to Tŷ Hafan felt like the end, but it turned out to be a new beginning.”
After the fear and devastation of the previous weeks, it was at Tŷ Hafan that the couple finally found some hope and happiness.
“What we found at Tŷ Hafan was something truly special – a place filled with laughter and smiles and love. We knew straight away that this was where we wanted to be.”
On the first day at Tŷ Hafan, Alice’s grandfather had the chance to hold her for the first time. He hadn’t been able to hold Alice when she was in hospital, because she had been too poorly.
“As he cuddled his tiny granddaughter in his arms, he told us that his life felt complete. It was such a special moment for the whole family,” said Hannah.
Thankfully, Alice pulled through those early weeks and is now enjoying spending time at their home in Cardiff.
“There are so many ways Tŷ Hafan continues to be there for our family” said Ian.
“From the visits and phone calls from our family support practitioner, Hayley, to the short breaks we have at the hospice, they help make sure every moment we have with Alice is spent creating memories that will last forever. We know that when the time comes, and Alice reaches the end of her life, they will support us through that too.”
Jenna Lewis, Head of Individual Giving at Tŷ Hafan said: “Although our hospice is based in Sully, Tŷ Hafan’s care extends much further into communities across Wales. Thanks to Tŷ Hafan, Alice’s short life is being lived to the full. We want to help more families in need of our help, but to do this we need the public’s support.”
Tŷ Hafan offers comfort, care and support to life-limited children and young people and is dedicated to improving the quality of life for the whole family. To continue to offer its services to families, it relies on the generosity of the public, its corporate sponsors and volunteers.
To support the Precious Moments Appeal, please visit www.tyhafan.org/precious or call 029 2053 2255.