The Muir Maxwell Trust, a paediatric epilepsy charity, aims to make a difference by providing children and their carers with practical support and by speeding up what can be a frustratingly slow diagnostic process.
Though not a dedicated Helpline, we’re always on hand to give help and advice to those facing the challenges of caring for children with severe epilepsy.
There are more than 70,000 children with epilepsy in the UK, of which around 30,000 have uncontrolled epilepsy and 15,000 are chronic sufferers.
Children with difficult epilepsy can have learning difficulties, behavioural problems and in extreme cases severe developmental delay. Caring for a child with complex epilepsy is challenging, requiring twenty four hour care. The risk of death of a child with epilepsy whilst sleeping is significant. Constant sleep deprivation for parents is normal. The strain on the family is immense and many do not survive as a family unit.
In most cases, families have no one to turn to for help – such is the level of care in this country for the oldest disease known to man.
The Maxwells are one such family.
Ann and Jonny Maxwell have wrestled with 19-year-old Muir’s severe epilepsy since he was four months old, with little help and no one to turn to. In 2003, recognising this lack of support for children and their carers, they established The Muir Maxwell Trust (MMT).
From small beginnings in Ann’s study in their Edinburgh home, the Trust has emerged as one of the UK’s leading charities supporting paediatric epilepsy. In just five years, it has raised over £7m for child sufferers.
The Trust provides much needed practical support to children and their carers struggling to cope with this devastating condition, whilst raising awareness and understanding of childhood epilepsy.
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