Sian G

Age 19

Demelza Kent

"The heroes in Sian's life"

My name is Sian and I'm 19 years old. I was born with a rare inherited metabolic disease called methylmalonic acidaemia (MMA). MMA is a life threatening condition with a number of complications. I also suffered a metabolic stroke in 1996 and am now a wheelchair user.

I've been using Demelza since 1999 and it feels like a second home to me. Demelza is somewhere I can go for some ‘me time'. I've been lucky to have had some wonderful opportunities through Demelza and have made a number of new friends too. I love being part of the TIZ (Teenagers) group and enjoy the regular activities it offers.

I'm a girlie girl and my artwork reflects this. The photographs represent just a few of the people who I count as my heroes. I'm in the middle; my family are at the top along with Sam and Andrea, children's nurses on the ward. Lynn and Pam supported me brilliantly throughout secondary school and Dr Little was my consultant paediatrician before he retired. Franzisca was my first physiotherapist and Julia used to teach me in the hospital school. Mary used to be the ward sister but is now the Director of Children's Nursing; she's worked really hard to help make the transition from children's to adult services less stressful.

I could have added so many more people. Everyone who has got me to where I am now is a hero and if I had been able to add a photo of all of them I would have.

Please note this case study (images and copy) must not be used or replicated in any other form without prior consent from Children's Hospices UK.

This artwork is on card and measures 840mm wide, by 600mm high.