Jordan, 16, from St Leonards, was diagnosed with Duchenne’s Muscular Dystrophy at the age of 3 which means his muscles gradually get weaker. He is in a wheelchair, on heart medication and has to be ventilated at night to help him breathe. His mum Sarah is his main carer.
But despite his condition he is studying ICT at Bexhill college, loves cars, motorsports and photography. His family are supported by Demelza Hospice Care for Children – Jordan stays at the hospice in Sittingbourne and goes out on trips with his community nurse. Jordan tells his story.
I started coming to Demelza’s hospice in Sittingbourne when I was five or six. I probably had an idea it was going to be like a hospital but it was more like a big house.
Demelza is my place. It feels better than home. I like the freedom. It’s like a holiday. I get to stay up late, watch TV in bed, get up when I want.
At home I have to go to bed when the carers come in. I have two carers in the morning and one in the evening to wash and help me into bed. I can’t brush my teeth or wash my hair. I can’t feed myself, I can’t lift my arms up. I can wiggle my feet a little but I can’t lift my legs up.
I like the art room at Demelza as I enjoy drawing and I am able to do it with a pencil. I’ve made lots of friends with the staff as well. I like going in the gardens with James and making water rockets.
At Demelza I get one to one attention. I am treated normally, I have choices.
I love the ensuite bathrooms as I don’t have a bath at home. It’s more relaxing than a shower. I get more privacy as well. I am also able to have reflexology which helps me relax.
I was one of the first to try out the new hydrotherapy pool. I love the pool as it is the only way now I can manage to walk by holding onto the bars. The warm water really relaxes me and helps me to feel free.
As well as getting to go to the hospice they bring the hospice to my home. I know the nurses well now – we sometimes go out for meals, go to the cinema or go down to the park.
After I had back surgery I stayed at Demelza for five weeks. It was ok but I was in agony at first and I had 32 stitches.
My condition is progressive. I found out what was going to happen when I was about 13.
My close friend who had the same condition as me passed away last year. It was really hard for me as he had just undergone the same spinal surgery as I had had and he was the same age. I was very ill afterwards my surgery but he was just too weak to pull through. He was my best friend and partner in crime at Demelza. It hit me really hard but being able to go to Demelza and just talk to the staff about him was really good and helped me a great deal. I still keep in contact with his mum which also has helped a great deal. Us boys just have to live our short lives as best we can and not think too much about it.