Teenager Lucy has a string of conditions affecting her joints and her digestive system but she is not letting that hold her back - she has recently passed her driving test and has been fundraising for the charity which means so much to her and her family.
Seeing the 17-year-old relaxing on the sofa you would think she was like any other teenager. It is only the Hickman line in her chest and the wheelchair nearby that she regularly uses that give away the difficulties she faces on a day to day basis.
Lucy is on several different medications and is almost entirely reliant on TPN (total parenteral nutrition) for her daily nutritional needs. The TPN bag has to be taken out of the fridge two hours before it is needed in the afternoon. Connecting it takes about 25 minutes, and is then pumped into Lucy over an 18 hour period. It takes another 15 minutes to disconnect her the following morning.
The conditions the teenager has - Ehlers Danlos Syndrome classical type 2, postural orthostatic tachycardia syndrome, gastroparesis, intestinal failure, Raynaud's and scoliosis – have resulted in several hospital stays including over Christmas and New Year.
Lucy says: “Last summer I could not eat at all. My digestive system was failing.”
Despite the Ehlers Danlos syndrome causing problems with her joints dislocating, Lucy has passed her driving test in an automatic car and along with her friends from Heathfield College has been putting on a host of fundraising events for Demelza.
nurses offer support, advice and take Lucy out on trips or come to the family home so her mum Alison can have a break.
Alison says: “It means I can go out and have fun with my friends and not worry about Lucy for a few hours.”
For Lucy the support from Demelza means just being able to be a teenager: “It’s time I can spend just being a bit more normal with people my age. I have to plan everything around medication and my TPN feed. I always have to have emergency medication with me.”
Could you be a fundraiser like Lucy? Find out how to support Demelza.