Introduction
Here at the Welsh Youth Parliament, we’re proud to work with fantastic organisations who work with young people from all backgrounds across Wales. During its second term, the Welsh Youth Parliament will work with 18 partner organisations, and we’ll be featuring them here on our website and our social media channels over the next few months.
This week, we are spotlighting our partner organisation Tŷ Hafan Children’s Hospice.
Tŷ Hafan Children’s Hospice
Based by the sea in Sully in the Vale of Glamorgan, Tŷ Hafan is a leading children’s hospice in Wales, supporting south, west and mid regions of the country.
Tŷ Hafan was established in 1995 by Suzanne Goodall after discovering there was no children’s hospice provision within Wales, and the hospice opened its doors in 1999. Tŷ Hafan is currently caring for 261 children with life-long progressive conditions in Wales and since opening has supported around 1,000 families. Ongoing bereavement support is also provided to over 100 families each year and around 50 young people and their families who are supported in their transition into adult services. The aim of the hospice is to create a Wales where all children who may die in childhood live fulfilling lives.
Tŷ Hafan’s focus is on improving the quality of life of a child and their family, addressing their physical, emotional, spiritual and social needs. They provide holistic paediatric palliative care to children with life-long progressive conditions and their families. This includes hospice-based residential care, clinical support, end-of-life care and a range of psychosocial and therapy support services in the community and at the hospice. When a child is close to the end of their life, Tŷ Hafan becomes a family’s safe haven, by their side during this incredibly difficult time and for as long as needed afterwards.
As well as providing clinical care and support for hundreds of young people and their families each year in Wales, the hospice has created a community beyond just medical care. In 2008, Tŷ Hafan became the first hospice in the UK to have its own Scout Group. The Scout Group does not charge subscriptions and relies on an ongoing fundraising programme.
The group is open to all children receiving care there, their parents and their siblings. Members range in age from five to 19, and activities undertaken so far have included pioneering, toasting marshmallows and making catapults, with the children receiving certificates after taking part in each activity. Tŷ Hafan Scouts have also undertaken their very own scout camps and earlier this year received the Queen’s Award for Voluntary Service.
Tŷ Hafan is proud to be a charity working with some of Wales’ most vulnerable young people and were delighted to be selected as a Partner Organisation for us at the Welsh Youth Parliament. Below, we introduce their first ever Youth Parliament Member, and Wales’ first ever representative with a life-long progressive condition who will be working closely with other children from Tŷ Hafan, as well as Wales’ other children’s hospice Tŷ Gobaith, in North Wales.
Seth Burke WYP Member
“My name is Seth Burke, I’m 13 years old, attend St. Cyres School in Penarth and I’m your Welsh Youth Parliament Member for the South Wales Central Region, based in Dinas Powys, Vale of Glamorgan. I’m proud to be partnered with Tŷ Hafan children’s hospice, who have been helping me and my family for the last five or so years.
“I was born with a condition called Duchenne Muscular Dystrophy (DMD). This means my muscles don’t grow as strong as those other children without DMD. I had always been fairly active, but during the first lockdown I broke my ankle. I was in our old house, in a cast, and now I have not stood on my feet for so long that I can’t do it anymore.
“I’m so proud to be a Welsh Youth Parliament Member – and even prouder to be the first Welsh Youth Parliament Member who is in a wheelchair and has Duchenne Muscular Dystrophy (DMD). I want to be a strong voice for other children like me, for other children who use wheelchairs and for children’s hospices, and those families and friends who go above and beyond to make sure that nothing is unachievable. Something I am particularly keen on tackling is access to different spaces for people like me. I want to create a Wales where everyone can have fun, visit local parks and other spaces, regardless of whether they are in a wheelchair or not.”
Speaking of his ambitions to Tŷ Hafan’s ambassador, Michael Sheen, Seth said: “I have five priority areas that I wish to tackle in my role:
- Protecting our environment and the natural world
- Improved accessibility to public spaces for people with disabilities
- Tackling online bullying
- Addressing mental health in children and young people
- Increase access to free clubs that promote physical activity in children and young people.
“After my three years in office, I hope to have helped to create a Wales that is more compassionate to children like myself, and to ensure that Wales’ children’s hospices get all the support they can so they can help even more young people.”
Chief Executive of Tŷ Hafan, Maria Timon Samra said: “Tŷ Hafan is so pleased to be supporting Seth on his journey in the Youth Parliament. As the first ever Welsh Youth Parliament Member with a life-long progressive condition – and the first ever wheelchair user to be represented in the Senedd – we are confident that he will make a lasting difference.
“We look forward to seeing what he, and his peers in this year's cohort, achieve together.”
