Children’s Hospice Week, the only week in the year dedicated to raising awareness and funds for the 49,000 children across the UK living with life-limiting conditions and the lifeline services that support them, ran from 21 to 27 May. This year, our aim was to show that children’s hospices are places where children and their families live life to the full, no matter how short it may be.
Tŷ Hafan’s services provide comfort and care to around 250 life-limited children and their families every year to help ensure that a ‘short life is a full life'. The service we provide allows families the time and confidence to share precious moments and make the most of the time they have together.
“Tŷ Hafan is a very different place to what you might imagine”, said Tŷ Hafan Chief Executive, Rob Jones.
“Of course we deal with serious and challenging conditions, but the hospice is also a joyous place, full of life, where our families experience a vital break from the realities and trials of caring for a life limited child 24/7. Each service we provide is an essential lifeline that has a specific purpose and helps raise the quality of life for children and their families. From personal experience, Tŷ Hafan made a fundamental difference for my family when we were fortunate to be referred six years ago.
“Children’s Hospice Week is highlighting how we create moments that matter for our families and help them make memories together. Summer’s approaching, but while most families are packing their suitcases for their summer holiday, many families we support are packing theirs to come to Tŷ Hafan for vital short break care”, added Rob.
One exhausted Mum who has experienced first-hand how time at Tŷ Hafan lets her spend precious time with her family is Bridget James from Aberystwyth. Bridget’s eldest daughter, eight-year-old Elain, has a complicated heart condition and a rare genetic disorder. She spent the first year of her life in intensive care and for three months of that she was fighting for her life. The family has been coming to Tŷ Hafan for short break care for the past seven years.
“Life is just a constant rush and I am always on the go, I never get any down-time, but a day at Tŷ Hafan is the complete opposite”, said Bridget.
“I don’t relax at all at home, so for me my week at Tŷ Hafan is my only break for what feels like such a long time. There are no day-to-day pressures and I can feel myself starting to unwind as the days go on”, she added.
Bridget continued: “Elain has music and play therapy, she enjoys trips out to Cardiff ice rink and spends as much time as she can in her favourite place – the hydrotherapy pool. And it’s so important for my other daughter, 3-year-old Martha. She doesn’t have to help me take care of Elain, she can just play and enjoy herself”.
“On a practical level, I don’t have to cook, clean, do the washing or any of the other usual household chores. What is really important for me is the quality time I get with my girls. I am more relaxed so I can enjoy the special moments. We love Tŷ Hafan . They are a lifeline for us and help us create special memories which we’ll cherish forever”.
Rob Jones added: “Every year, more families are turning to us for care and support than ever before. It costs nearly £12,000 a day to run Tŷ Hafan which is why every penny raised during Children’s Hospice Week will make a difference to hundreds of children and their families across Wales”.
Children’s Hospice Week is organised by Together for Short Lives - the UK charity for children’s palliative care. www.togetherforshortlives.org.uk