Charlie
Pharmacopoeia recently combined framed artworks, films, poems and a trampoline for an installation titled Charlie.
Cystic Fibrosis is a condition inherited via autosomal recessive genes. These genes cause a disturbance in the way sodium chloride is transported at a cellular level. This in turn causes all sorts of fluids in the body to be more viscous than normal and clog up various organs including the lungs. When a child is diagnosed with CF he or she immediately changes from being a normal child to a not normal child. Society views them as ‘different’ or ‘special’ and Charlie is one of these kids.
For 10 years we have been talking to him and his parents about the experience of his condition, the medicines he takes, his hours of daily treatment, times in hospital, scans and xrays. Charlie’s treatment has been directed at keeping his lungs as clear as possible by a combination of physiotherapy, inhalations and antibiotics to prevent infection.
While most of us are struggling not to get fat, Charlie is struggling not to get thin. Every time he eats he has to take between one and six enzyme capsules to replace the digestive enzymes he cannot produce naturally. Without these he can’t absorb enough nutrients from his gut and will become severely malnourished and die. He remains very cheerful in spite of having spent long months in hospital on more than one occasion.
Charlie’s mother Maz has researched the treatment of CF around the world and has been particularly interested in programs developed in Denmark. She says ‘I think medically the Danes have been very significant for CF – they have the best statistics globally as well as innovative doctors. The most influential piece of the Danish protocol for us was the use of the trampoline. Apparently they actually hand them out as part of treatment. As a result we always had a small home-sized trampoline in the house.’
Treatment as a toddler
Charlie’s response as a child
