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"We didn’t know what a seizure was the first time we saw it in Muir. And we had no knowledge of epilepsy," says Muir’s mum, Ann. "My husband, Jonny, thought it had something to do with face slapping!" We knew absolutely nothing.

So what is epilepsy?

Epilepsy has been around since biblical times. It is also the most common neurological condition, affecting over 400,000 people in the UK. Epilepsy is defined as a tendency to have recurrent seizures. A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal messages between brain cells.

Epilepsy is not a single condition. There are about 30 different kinds of epilepsy and nearly 40 different types of seizure. Epilepsy can affect anyone, at any age and from any walk of life but when the onset is in infancy, the long term effects can be quite devastating resulting in behavioural problems, developmental delay and sometimes severe brain damage.

Epilepsy is poorly understood. It is often perceived as a condition that can easily be controlled with medication but in over a third of patients this is not the case. Despite this perception, epilepsy still carries a social stigma.

It is also an area of medicine that is seriously under resourced in the UK – in particular, paediatric epilepsy. Although our knowledge of the condition has increased in recent years and more effective treatments have been developed, the provision of services and access to them is quite seriously inadequate.

The Muir Maxwell Trust has endeavoured to increase awareness and understanding of complex childhood epilepsy among the general population and to highlight to the medical profession the plight of the parents. Where possible, MMT has attempted to speed up the diagnostic process and secure a long term commitment from the NHS with regard to that diagnostic process.

The Trust’s awareness campaign extends to five areas:

  • effectively communicating the details of the cause to guests attending the Muir Maxwell Trust’s annual fundraising events;
  • offering assistance and support in the organisation of paediatric epilepsy medical conferences;
  • speaking to schools and other organisations about the work of the Trust and the effects of childhood epilepsy; 
  • campaigning for recognition of the needs of children with complex epilepsy and their families: and 
  • providing a voice at the end of a telephone that will provide moral support to families struggling to cope.