Lucy Clements, 17, forgot her own discomfort to take part in a tough wheelchair walk the full length of Eastbourne seafront in aid of Demelza Hospice Care for Children.
Lucy, of Sandy Cross, Heathfield, suffers from Ehlers Danlos Syndrome (EDS) - a genetic connective tissue disorder that affects the whole body.
Her joints are hypermobile and dislocate daily, she suffers chronic pain, constant nausea, fatigue and her stomach and intestines have failed so she is fed intravenously by TPN through a Hickman Line in her chest which goes directly into her heart.
Lucy attends Heathfield Community College where she is studying for ‘A’ levels in physics and maths. Mum Alison is full of praise for the school’s ‘wonderful support.’
Lucy is also very musical, playing cornet (Grade 8 at 14 years old), piano and saxophone and she played with the National Children’s Brass Band of Great Britain. Her sister, Katy, 11, also suffers from EDS although her symptoms are not as severe as Lucy’s.
Alison explained Katy’s illness was not diagnosed for several years although her daughter had suffered from various, unexplained conditions, experiencing severe back pain. She went on: “She wore a brace for two years which helped a great deal.”
Eventually she was referred to paediatric consultants at Great Ormond Street Hospital in London where treatment was started. She has to take 50 different tablets a day. There is no absolute cure in sight but Alison said she lives each day in the hope that methods of treating the condition effectively might be found.
Lucy has raised more than £800 for Demelza so far. If you would like to help this brave teenager, then go to www.justgiving.com/eastbournefundraiser