Fourteen-year old Cardiff schoolboy Seth Burke has been using Tŷ Hafan for the past six years. The St Cyres pupil was born with Duchenne Muscular Dystrophy, a progressive condition, which means that his muscles are not as strong as those of children who do not have DMD.
“At the start of the first lockdown I broke my ankle,” said Seth. “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 any more.”
Seth, who lives in Dinas Powys with mum and dad, Lisa and John and younger brothers Reggie, 12, and Elijah, seven, now has a powerchair, which he loves.
“It’s a lot quicker than walking. Plus I can get around school really easily and I am very good a running toes over!” says Seth.
Seth uses Tŷ Hafan for short breaks, often with his friends Cody and David, who also have DMD.
“It’s a different experience for us,” says Seth. “We can get shirty about stairs together.
“But really Tŷ Hafan is a place when 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. The roast dinners are nice and the lemon squash is the best in the world.
“The staff are also great – they play hide and seek with me. The first time I went there – I hid so well and they did not know here I was, and they nearly called the police! Now we have to use a code word just in case they can’t find me!”
Mum Lisa says: “Tŷ Hafan is a complete lifeline. Seth gets the full care package for the entire weekend and we don’t have to worry about anything. Plus Seth can meet his mates who are dealing with similar things as Seth.
“Plus Tŷ Hafan has the Super Sibs group which is a fab resource for Reggie. And the Tŷ Hafan Scouts Group is also brilliant. It’s just a wany of accessing normal things – making everything easy for him.
“People should definitely support Tŷ Hafan.”
Since November 2021 Seth has also been a Member of the Youth Parliament representing Tŷ Hafan.
“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 DMD,” he says.
“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.”
Click here to follow Seth on his Twitter feed.
