In this week’s #FamilyFriday, we meet 12-year-old Seth from Cardiff. He has been using Tŷ Hafan for the past four years having been born with Duchenne Muscular Dystrophy (DMD), a progressive condition where his muscles are not as strong as those of children who do not have DMD. Here, he tells us why a visit to Tŷ Hafan means so much to him.
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 anymore.
Seth, who lives in Dinas Powys with mum and dad, Lisa and John, and younger brothers Reggie, ten, and Elijah, five, 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 at running toes over!” says Seth.
Seth uses Tŷ Hafan for short breaks, often with his friends Cody and David, who also have DMD.
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 where I was, and they nearly called the police (they didn’t really)! Now we 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.
“Tŷ Hafan has the Super Sibs group (a support group for brothers and sisters of Tŷ Hafan children) which is a fab resource for Reggie. And the Tŷ Hafan Scouts Group is also brilliant. It’s just a way of accessing normal things – making everything easy for him.