Demelza House is an eight-bedded childrenís 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 childrenís hospice in Birmingham, and loved her job. Her parents realised that the South East didnít have anything similar, so started fundraising. Iíve 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. Itís 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. Thereís 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. Thereís also a wall with different objects on, like brushes, door knobs and plugs for us to feel. Thereís 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 youíre 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 youíre a fussy eater like me! There is a big dining room where all the children eat. Upstairs where the parentsí 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 donít go to that. At the weekends there is a lot of pampering. Iíve 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. Theyíll do anything you want them to do when youíre 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 roomís called TIZ. It stands for The Inclusion Zone. We had meetings every couple of months to discuss what was to go in the room. Itís 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. Thereís 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. Thereís no getting out of washing up! There are loads of other things in the room. Iím working on trying to get a pick ní 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.
Iím now involved quite a lot with the Philip Lawrence awards. I go to the sifting weekends to sort out the entries for that yearís PLA, and Iím 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 Iím not involved as much. Chris doesnít 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 Iím 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.
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