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The price is five hundred pounds.

In epilepsy there is a risk of death, particularly whilst sleeping. It is referred to as SUDEP - sudden unexplained death in epilepsy. As parents, it's what we all fear and not enough is known about SUDEP to allay those fears. The researchers are working hard to identify the cause and he who does will be credited with solving one of life's great mysteries. 

In the meantime, our children at risk of SUDEP, require someone to watch over them. Parents maintain a relentless night time vigil, sleep deprived and worried but reassured in the knowledge that if they are there when a seizure happens they might be able to address the situation with rescue medication or the recovery position to ensure they are breathing.  Comforting their child after a seizure is important too. The post-ictal phase can be disorientating. Witnessing a seizure is distressing, sometimes traumatic.  Although the post-ictal phase is still upsetting, immeasurable relief is experienced by parents and carers once the seizure is over. 

Our 18 year old son Muir, had his first seizure when he was just 4 months old. I had never seen a seizure before. I described his little body to the hospital doctor that night as being in spasm. He was sleeping and I just happened to be lying with him. He took a sharp in take of breath, almost like a last gasp before his tiny limbs began to jerk and his big blue eyes began to roll. I can't remember how long it lasted. I was terrified and I felt utterly helpless. 

There were more to follow in the weeks and months thereafter, none of them predictable, each one a little bit different. Then came the seizure that wouldn't stop - called status epilepticus. We thought we were losing him but Muir is resilient, we know that now for sure. Against the odds he survived. A diagnosis of epilepsy soon followed and rescue medication now goes with us everywhere. But that early legacy of aggressive and out of control seizures has left him profoundly brain damaged - and he is forever at risk of SUDEP. 

We remain sleep deprived but for different reasons. Muir will fend off impending seizures by staying awake at night. It is only when he gives in to sleep that seizures win through. The bags under my eyes are permanent now. Those who know me, now know why.  Perhaps I am not ageing quite so gracefully but it has been a small price to pay. 

The other price we have paid is £500 for an epilepsy alarm that sits under the mattress of Muir's bed and alerts us to a night-time seizure whilst we are sleeping. I say this flippantly but way back in the day an investment in an epilepsy alarm was positively discouraged by the medical profession. They were considered unreliable. We paid £1000 for our first alarm and it was a 'life saver' for us. Of course, we cannot say for sure it saved Muir's life - it may well have but metaphorically it saved us all because it brought us some quality of life in the form of peace of mind and the return of long lost sleep. Muir was able to sleep, not just in his own bed, but in his own room and his siblings were unburdened of their own worries, having privately and quietly maintaining a vigil over their brother themselves for years. In short, having an epilepsy alarm in the family home was transformational. It gave us our life back. 

So when we established our charity, to provide practical support to children with difficult epilepsy and their families, we began by distributing epilepsy alarms. Most of our projects complete but the job of distributing epilepsy alarms goes on. We continually liaise with manufacturers to improve on the design, the reliability and to get the cost down. Early demand was manageable and over a decade later we have distributed over 3000 epilepsy alarms to families across the UK. Today we have a permanent waiting list, capped at 300 families. We fundraise relentlessly to meet this demand. Our discussions with the medical profession and both Scottish and Westminster Government's are on-going about the essential need for epilepsy alarms in the home. Some doctors remain deeply sceptical, arrogantly dismissing the merits of this technology for children and families.  SIGN and NICE guidelines on epilepsy limit recommendations to the medical profession in hospitals regarding night time vigils.  Surprisingly, both Governments remain resistant to clear access to funding for epilepsy alarms at home, despite two fatal accident enquiries, published research papers and endless favourable testimonies by families - the shelves in our office are stacked with files full of thank you letters and cards from grateful beneficiaries. 

Money is short of course - but what price for potentially saving a child's life and preserving the well- being of family members who struggle to cope because their quality of life is so impacted? Sleep deprivation is a form of torture - but we choose it because our children require someone to watch over them. 

Children are still dying of SUDEP. Families are still struggling to cope. An epilepsy alarm might change that. 

The price is five hundred pounds.

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