In July, we received the exciting news that Tŷ Hafan had been successful in its application to become a partner organisation to the Welsh Youth Parliament (WYP) – the UK’s first parliament ran for, and by, young people in Wales aged between 11-18. We have been working hard to promote this opportunity to the young people we support. Today, in the Senedd Chamber, the Llywydd (Presiding Officer of the Senedd), Elin Jones, announced 60 new members of the Welsh Youth Parliament. Among those named is teenager Seth Burke, who has made history today by not only becoming Ty Hafan’s first ever Welsh Youth Parliament member, but also, the first ever member of the WYP with a life-long, progressive condition.
Seth, 13, from Dinas Powys, has Duchenne Muscular Dystrophy (DMD) and has been using respite services provided Tŷ Hafan since he was seven years old.
We caught up with Seth to find out more about his goals and aspirations, what being member of the Welsh Youth Parliament means to him and what he hopes to achieve during his term of office.
“My name is Seth Burke, I’m 13 years old, 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.”
St Cyres pupil Seth, who is also his school’s Apple Ambassador, uses Tŷ Hafan for short breaks, often with his friends Cody, who also has DMD, and David. Speaking of the hospice he said: “Tŷ Hafan is a place where I can get around easily and have fun. There’s an art room, plus The Den, which is a gaming room, and the pool is amazing. Last year I got a powerchair which I love. It’s much quicker than walking and makes getting around school much easier.”
Despite his condition, Seth doesn’t let anything hold him back. Speaking of his election to the second ever Welsh Youth Parliament he says: “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.”
Speaking of his priorities as a Welsh Youth Parliament Member, Seth said: “I have five priority areas that I wish to tackle in my role”:
Seth added: “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, and, I hope to gain the life experience and skills to go on to do whatever it is I want to do.”
Seth will meet up with his fellow Welsh Youth Parliament Members in the new year, with the first meeting of the Parliament set to sit in the second half of January 2022.
Speaking of his election, Maria Timon Samra, Chief Executive of Tŷ Hafan said: “As an organisation we could not be prouder of Seth, who has been coming here for the last five years.
“We are confident that he will be a brilliant advocate not only for himself, but for other young people in his region and across Wales, as well as for Tŷ Hafan, and Wales’ other children’s hospice Tŷ Gobaith.
“Seth already has plans underway to send a survey out to all children across Wales who use a children’s hospice to get an idea of what issues are important to them. We are confident that Seth, an articulate and engaging boy, will be a force for good – and will show many how important it is to listen to children from all backgrounds, facing different futures. We cannot wait to see him in action.”
You can follow Seth’s journey as a Welsh Youth Parliament Member by following us on Twitter @tyhafan – where we will be documenting his every move as he aims to make Wales a kinder and more compassionate place, whilst also making his mark on the Wales’ political institutions.