Registered Charity
No.1039651
Demelza
House is an eight-bedded children’s hospice in Sittingbourne, Kent. It provides
residential hospice care for children with life limiting illnesses and their
families. It was opened in 1998 in memory of Demelza James who died of a brain tumour in
1990 at the age of 24. She worked in a children’s hospice in Birmingham, and
loved her job. Her parents realised that the South East didn’t have anything
similar, so started fundraising. I’ve been going to Demelza since about April
2004 and I love it. They have eight bedrooms downstairs for the children
staying. Upstairs are the bedrooms for the parents, brothers and sisters if
they want to stay. The bedrooms look out onto the huge garden. It’s not like a
hospital at all. They have carpets in every room and comfy furniture, and
lovely wooden furniture in the bedrooms with facilities for different
disabilities.
In the house
there is an art room, music room and Jacuzzi room. There is also a sensory room
which has a warm water bed with padding round it and on the floor. It has
bubble tubes with beads in, so they make a noise. There’s a bean bag with a net
over it, so 
you can go in and relax. There are different
coloured fairy lights round the room and on the ceiling. There’s also a wall
with different objects on, like brushes, door knobs and plugs for us to feel.
There’s a CD player, so you can listen to anything from your favourite bands to
the sounds of water and birds. You can either go in this room and be calm and
relaxed or you can scream and shout and get your frustration out. The walls are
padded, so you’re not really heard.
There
used to be a dog called Coco. She was a chocolate Labrador and she used to come
during the day with her owner, Stella, and went home at night. She got fed a
lot by the children, so had a bit of a round belly. She was my substitute for
Molly and Daizy when I was there. Sadly
she died at the end of 2007. RIP Coco. xxx
In the garden,
there is a sheep called Minstrel, a large goat called Basil and two pygmy goats
called Dora and Darcy. The children can feed them with left over bits that get
put in a bucket in the kitchen. There are different parts to the garden such as
a sensory section where there are smelly plants such as lavender. There is a
big kitchen downstairs. There are a few chefs that work at Demelza House. They
cater for the needs of each child, like if you’re a fussy eater like me! There
is a big dining room where all the children eat. Upstairs where the parents’
bedrooms are, there is also a kitchen and a beauty room where Maggie does
different treatments for the children and parents. She does things from waxing
and ear piercing to massages. You can take the lift or the stairs to get to it.
About
once a year Demelza House has a girlie weekend. They also have one for boys but
obviously I don’t go to that. At the weekends there is a lot of pampering. I’ve
been to two so far. On the first one we had beauty treatments and had make up
put on. A photographer came to take photos. During that weekend, I had my first
haircut after my hair had grown back from chemotherapy.
On the next girlie weekend,
we went to London in a white stretch limo to see The Lion King at the theatre.
There are usually about six girls at these weekends. At Demelza each child has
a carer to look after them. They are all lovely and treat you all the same.
They’ll do anything you want them to do when you’re staying there. Within
reason though!
I
used to be on a committee with two boys, Chris and Wesley, who went to Demelza,
and my best friend from the hospice, Shahira. We designed an adolescent room.
There are a lot of things for young children at Demelza House, so this was for
the teenagers. The room’s called TIZ. It stands for The Inclusion Zone. We had
meetings every couple of months to discuss what was to go in the room. It’s
huge. There is a plasma screen, a brilliant sound system and portable DVD
players with headphones. The carpet is blue with red specks and there are lots
of fancy lights. The sofas and chairs are soft leather with vibrating
footrests. The backs recline and the feet go up. The chairs have controls on
the side. There’s a kitchen at one end of the room which has all the latest
gadgets. The sink goes up and down in height to get wheelchairs under it.
There’s no getting out of washing up! There are loads of other things in the
room. I’m working on trying to get a pick n’ mix machine in there!
In
December 2005 we won a Philip Lawrence award for TIZ. Phillip Lawrence was the
headteacher stabbed outside his school trying to break up a fight. His wife
Frances set up this award to recognize outstanding achievement by young people
in their community to show that not all young people are bad. We went up to
London for the rehearsal, and were put up in the Hilton hotel for the night.
The next day was the ceremony itself and Sir Trevor Macdonald hosted it. There
were dancers and people singing as the introduction, then there was a moving
speech from Frances. There were ten winners because it was the 10th
anniversary. The projects ranged from people who had set up an anti-bullying
website to people trying to stop racism, then people who helped clean the
streets and helped elderly people. We each got called up on stage in our groups
and were presented with a cheque for £1000 and a trophy. The ceremony lasted about
two hours, and then we had something to eat and got to meet the other
groups.
I’m
now involved quite a lot with the Philip Lawrence awards. I go to the sifting
weekends to sort out the entries for that year’s PLA, and I’m on the final
judging panel with Frances Lawrence, Sir Trevor McDonald, The Duchess of Kent
and a few other past winners. We get together and pick the winners for that
year which there are normally about nine.
As
for TIZ I’m not involved as much. Chris doesn’t go to Demelza anymore, Wesley
sadly passed away in 2006 and Shahira and I decided to pass our role on to some
other teenagers at Demelza, so they have now taken over the running of TIZ. We
now go to the events they organise.
There
is a sad side to Demelza House. The children that go there either have a
serious disability or are terminally ill. I went as terminally ill but I’m
better now. I still go though because I love it. There is a part of the garden
called the fairy garden. This is where friends and family plant things for
children that have passed away. There are ornaments and fairies hanging from
the trees. Shahira and I lost a friend in October 2005. Rest in peace Stacy.
xxx
Demelza
House is a fantastic place. It costs a fortune to keep it running, £3.5 million
a year.
The
aim of the hospice is to add life to days when days can not be added to life.
If
you’d like to donate anything or just look at the website, visit:
