Cerebral palsy is a non-progressive condition, that is not contagious, and it means that the sufferer is unable to use some of the muscles in their body in the normal way. There are three different types of cerebral palsy. Spastic cerebral palsy refers to stiffness and difficult movement, Athetoid cerebral palsy is the term used to describe involuntary and uncontrolled movements, while Ataxic cerebral palsy sufferers have a disturbed sense of balance and depth. It is usual for one person to exhibit aspects of all types of the condition. It is not curable, but through advanced technologies, many sufferers can lead productive lives.
Sandie, however, was left severely disabled. Now, in her mid-30s, she is just like she was as a two week old baby. Denise explains:
"Sandie has limited senses, we understand she has very little sight, and cannot hear, resulting in her never learning to talk. She recognises people only by their smell. When she wants something, she cries or screams, and we go through the usual things you would with a newborn. She gets advanced medical nutrition via a tube in her stomach and has done for years now, but she is able to drink water and thin fluids. If she isn't hungry or thirsty, we check to see if she has soiled herself, or if she is cold, or needs a cuddle. Illness can be very difficult because she can't tell us where it hurts. Recently, she had problems with her wisdom teeth and she needed a general anaesthetic because it would be too difficult to operate on her with just sedation."
Many children with cerebral palsy go on to get jobs and have a family, depending on how they are affected. Mark, aged 20, has a very different story to tell. He is able to do almost everything normally, and has injections in his legs to help him better control his walking. He works in IT, and lives in a semi-independent living complex with two other cerebral palsy sufferers.
Over the past years, there have been massive developments in the way that cerebral palsy is managed. Botox therapy is beneficial to some, who suffer with involuntary muscular spasms, but every case is unique and is managed as such.
Sandie has benefitted from some physical therapy sessions, but she will never have a normal life. Her mum says that although it sounds like a lot, managing the condition is quite easy once you get into a routine. With lots of support and a lot of learning, Denise has found the best way to spend her time when looking after Sandie, maximising her quality of life.