17 year old Antonia Payne-Cheney has been stuck in hospital for over a year, unable to move from her bed. Until the age of 14 she was a happy, healthy active girl who lived with her mum, Victoria and older brother Samuel, and spent much of her free time on her hobbies: gymnastics, competitive cheerleading and horse riding. Then things began to change. She began to feel very tired and had no energy at all. Gradually she became so exhausted that one by one she had to let her hobbies go.  She also began to fall unconscious for no obvious reason, injuring herself in the process. After multiple admissions to her local hospital in Gloucester, Bristol Children’s Hospital and finally the London Royal, a rare condition called Ehlers-Danlos Syndrome was diagnosed. Caused by a lack of collagen, (the ‘glue’ that holds us together) the condition causes Antonia’s joints to be hyper-mobile resulting in regular painful partial and full dislocations. Ehlers-Danlos also causes problems with the digestive system meaning that Antonia is now no longer able to eat normally and is fed through a line directly in to her heart. 

An additional devastating facet of Ehlers-Danlos is a condition called POTS (Postural Orthostatic Tachycardia Syndrome) which causes Antonia to collapse and lose consciousness whenever she tries to stand and sometimes even sit upright, meaning that she cannot even wash herself without help. Gymnastics, cheer leading and horse riding are now a distant dream. As a result of her complex condition Antonia has not been outside for more than a year, and will not able to go home until the necessary adaptations have been made to her family home. At 17 she has been unable to enjoy most of the freedoms and experiences a girl of her age should have. In spite of this she is an upbeat young woman who has become a young ambassador for the charity that has supported her through the last few years.

The Build

Antonia’s needs are complex; the POTS means that she must use a specially adapted wheelchair which keeps her legs elevated, preventing her from losing consciousness. This means that DIY SOS, using free tool and equipment hire provided by HSS, will have to provide additional space to allow her room to manoeuvre. In addition, to give Antonia the freedom to remain at home we must build a sterile space which will enable her to change her own feed bag, minimising the risk of infections to her heart. They must also provide her with a downstairs bedroom and a specially adapted wet room that works with her condition giving her back some freedom and dignity. 

Alongside this, they must create an accessible space that allows Antonia, her family and her friends to socialise. Having been so restricted in hospital it would also be a huge bonus to provide Antonia and her family with a garden for year-round use. Life for Antonia has changed completely and will continue to be difficult, but by pulling together to bring her home from hospital the quality of her life will be improved immeasurably.

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