rhys' story
I like to play games in
the den with friends I
have made at Tŷ Hafan.
It’s fab!
swansea
I do understand things about DMD; my
muscles have started to go weak and other
parts of my body are weak too.
From spending time with his mates to playing video games or going
bowling, outgoing Rhys loves nothing more than staying at Tŷ Hafan.
Rhys suffers from Duchenne Muscular Dystrophy (DMD) and he
and his family were referred to Tŷ Hafan in 2005.
The condition means that by the age of 10 most boys will use a
wheelchair and although life-expectancy can vary, many boys do
not live beyond their teens.
14-year-old Rhys is a cheeky young man with a wonderful sense of humour and faces his condition with such bravery.
'
I was about four years old when I started
coming to Tŷ Hafan. DMD means to me
that I get tired easily, and I can't use my
legs and body so well. I have difficulties
in doing things, such as different
activities. I have to use my electric
wheelchair to get around. I can do some
things on my own with support and I can
get around in my chair.
His mum and dad, Sharon and Mark, felt reassured that there was
an organisation like Tŷ Hafan to call upon when life became more
difficult.
Rhys said: “I was about four years old when I started coming to
Tŷ Hafan. DMD means to me that I get tired easily, and I cannot use
my legs and body so well. I have difficulties in doing things, such as
different activities.
“I do understand things about DMD; my muscles have started to go
weak and other parts of my body are weak too. I have problems
moving. I can't walk any more but I use my chair to get around. I
need help in school and at home and when I go to Tŷ Hafan, I have
my carers to help me. There are things I cannot do, but there are
other things I can do with help.
“ I really enjoy going to Tŷ Hafan. It is a great place to visit and stay.
The carers and people are so friendly, helpful and great fun. I enjoy
staying for a long weekend. I like going out with my carers and I
enjoy the meals at Tŷ Hafan – they are great. I like to play games in
the den with friends I have made at Tŷ Hafan. It’s fab!”
Tŷ Hafan takes its support to wherever it is needed: at home,
at school or in hospital. We do this completely free of charge
for families in Wales that need us. Please help us continue to be
there for life-limited children and their families, so they can make
the most of the precious time they have left together.
For more information visit www.tyhafan.org or call 029 2053
2199.
Mark said: "We were overwhelmed by how welcoming everyone
was when we first arrived. The care team are fantastic and we can't
think of a better place for Rhys to visit. He loves it and has made so
many good friends as a result."
www.tyhafan.org
Registered Charity Number: 1047912. Tŷ Hafan, Hayes Road, Sully, CF64 5XX
the hospice for children in Wales
yr hosbis i blant yng Nghymru