On Thursday January 25, it was exactly 25 years to the day since Tŷ Hafan Children’s Hospice first opened its doors to children with life-shortening conditions, and their families, in Wales.
The first dedicated children’s hospice in Wales, Tŷ Hafan welcomed its first intake of children on Monday, 25 January 1999, with the then 12-year-old Emily Weaver from Brackla being the very first young person to benefit from the charity’s services.
Jacob Ferriday from Barry, then aged two, was also among the first group of children to attend Tŷ Hafan’s purpose-built hospice in Sully, near Cardiff.
Today, 25 years on, 37-year-old Emily and Jacob, 27, returned to the hospice with their parents, joining families currently being supported by the charity and Ceri Phillips and Jane Wilson, nieces of the charity’s founder Suzanne Goodall.
Liz Weaver, Emily’s mum, said: “Emily was born at 29 weeks with severe cerebral palsy and hydrocephalus, and we were told it was very unlikely that she would survive at all.
“But despite two further major traumas resulting in more brain damage, survive Emily did, and it made us stubborn and taught us how to challenge the authorities and not just accept what we are told”.
“As she was classed as having a life-limiting condition Emily, then 12, was referred to Tŷ Hafan before it opened. She was the first child in through our doors, and we never looked back after that.”
“Unless you are in a situation like ours, the majority of people just don’t get it. Caring for someone like Emily is not just for 24 hours, it’s for 24 hours, seven days a week, 365 days a year – but for how many years? You just don’t know”.
“Tŷ Hafan was, quite literally, a lifeline for us and Emily absolutely loved it. I dread to think what life would have been like for us without Tŷ Hafan.”
Jacob Ferriday’s mum, Sally, added: “Tŷ Hafan has had an amazing impact on Jacob. He has so loved it here. I was a single mum and Jacob is one of seven. So, he’d come in to stay for three days at a time and that couple of days where I wasn’t looking after him round the clock gave me that little bit of a break. Even if it just means you can catch up on your sleep a bit. It’s so important”.
“I think until you are in that position, or are closely involved with it, you’re ignorant of what it means to have a child with a life-limiting condition, or to be disabled. And people can be so cruel”.
“Things are starting to change and things are starting to get better. People are more aware of others. But there is still a long way to go.”
Maria Timon Samra, Chief Executive of Tŷ Hafan, said: “For the past 25 years it has been the most immense privilege for Tŷ Hafan to support children with life-shortening conditions and their families in Wales who are facing the unthinkable. No family should have to face the unimaginable loss of their child alone. With children and families at the heart of all we do, we provide free care and support in our hospice and in the community, offering a lifeline throughout the child’s short life, at end of life, through bereavement and beyond.
“Today families attending our regular Stay and Play hub have been joined by Emily and Jacob, two young people who were the first through our doors in 1999, and by our founder’s family.
“We reminisced about our inspirational founder, Suzanne, and took the opportunity to share our individual memories of Ty Hafan and what it means to us all.
“However 25 years on, we are very mindful that demand for what we do is increasing, and, thanks to medical advances, the children have more complex conditions. Our focus must always be on what we can do today, tomorrow, and in the coming months and years.”
Tŷ Hafan was the brainchild of Suzanne Goodall from Beddau. In 1988 the newly retired occupational therapist made it her mission to establish Wales’ first children’s hospice. Eleven years of intensive fundraising and campaigning later, Tŷ Hafan opened its doors.
Fundraising for the charity was helped substantially by the support of its first Patron, the late Diana Princess of Wales. In 1995 the Princess persuaded her friend and celebrated tenor Luciano Pavarotti to perform the fundraising ‘Concert of Hope’ for the charity at the then Cardiff International Arena (now the Utilita Arena Cardiff), which substantially helped to raise the £2.6m needed to build and set up the hospice.
The charity, which has supported 1,097 children with life-shortening conditions to date, is now preparing to reveal its future plans at a Gala Dinner at the Mercure Holland House in central Cardiff on Friday, March 1, St David’s Day.