Comment: Epilepsy is not just a week-long issue

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PURPLE is the colour of Epilepsy Week and that is the colour which will be most visible this week as fundraisers for epilepsy charities call on the public for much needed support.

The word “purple” was also one of the first my son Muir uttered when he was learning to speak.

But Muir has Dravet Syndrome, a severe form of epilepsy that causes brain damage, loss of language, profound learning disabilities and behavioural problems.

As his condition progressed, the word purple was one that he lost completely.

He is now 16 and much has been taken from him by epilepsy.

So I have fallen out of love with the colour purple and I struggle with the concept of an Epilepsy Week.

Muir’s epilepsy and its consequences are with us every minute of the day and night, all year round.

In Scotland, there are more than 1,000 children and young adults under the age of 25 whose cognitive abilities are limited by the onset of complex epilepsy in infancy.

Most of these young people will have life-long learning disabilities that will prevent them ever living independently and they will require round-the-clock care for the rest of their lives.

It is impossible to fully describe family life with a severely epileptic child, except to say that the vigil is held for 24 hours of every day of every year for all family members. Exhausting, demanding, frustrating, loving, tender and heartbreaking.

For us, the focus is now squarely on the future. As Muir becomes an adult, there is an increasing need to find a solution that will provide him with life-long care and as fulfilling a life as possible.

I strongly believe that the Scottish Government must look at the need for high quality residential care to sit alongside the options for community and home support.

If not, I fear that profoundly learning disabled children and their families in Scotland are destined to an eternal struggle to cope with life behind closed doors, forgotten about – until one week in every year, when there is a deluge of purple.

• Ann Maxwell is the founder of the Muir Maxwell Trust, the leading paediatric epilepsy charity. Epilepsy Week runs until 25 May