Rhys is 18, and recently stayed with us for respite. In this video, Rhys compares the kebab shops of Llandysul with those of his hometown Swansea. He shares his thoughts on staying on top of a supremely challenging life-limiting illness through humour and positive thinking. This is one inspirational young man…
“Nothing really stood in my way. I’m just happy. Day by day – it’s easy. Just thinking positive, not negative, always positive.”
My name’s Rhys, I’m from Swansea (as you can tell) I’m 18 and… ‘ow’s it goin’ mush?!
This will be my second time [for respite at Skanda Vale Hospice]. Um, yeah, I’m enjoying it so far. So far… I already had a takeaway from the kebab shop. It wasn’t up to par with the kebab shops in Swansea, but you know, it’s something you can just… eat!
What’s your diagnosis?
It’s something called Muscular Dystrophy. I can’t say it right, never could, throughout my life. But yeah, it’s something to do with the muscles wearing away, and all that. It does make me knackered, but I still enjoy Swansea.
I’ve really had it throughout my life – since I was born. When I was nine, ten (or maybe eight) – around that age, I was getting tired, and stuff like that. Every time I tried to walk I was struggling to walk.
I’ve been in school all my life really, and currently, I’m in college as I said – I’m doing Level 2 Business Studies. Quite brainy! Yeah!
So you carried on with school and everything as normal?
Yeah, as normal. Nothing really stood in my way. I’m just happy. Day by day – it’s easy. Just thinking positive, not negative, always positive. Like most people in Swansea! Always positive.
What’s a typical day like at home?
I do need someone with me to go to the shops and get me stuff. So I do go out, but mainly to college really. I do go shopping but that’s mainly with my mum. But when I do out, I do go out. I get drinks, I have food, just relax and talk.
I get a lot of pain, but it’s best to just brush it to the side and live your life. Not think about the negative. Always positive. When you’re thinking negative you then can get depressed and that wouldn’t be good, would it? No good.
What other services are available for young people?
I used to go to Tŷ Hafan a place in Barry, Cardiff. Children or teenagers, they go there for respite, but after 18 (which is their age restriction) basically they can’t go to any other places. Only this place [Skanda Vale Hospice] in Wales. There might be some other places in England, but the only place in Wales is here.
Would you recommend it here?
I would say yes, just come here as fast as you can, because if you don’t, then all of the spaces will be gone, and you’ll be like… awww, I can’t do anything now!
I can’t really put it into words, in that sense… it’s everything, the atmosphere, the people, the ambience! Is that a word? Yeah, basically, everything. This place, as soon as you arrive you feel calm and relaxed, yeah! That’s mostly the feeling you get in this place. Always calm, always professional, always good.