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a letter from the scott family

The Scott family tragically lost their son, Tom, in 2015 due to SUDEP (sudden unexpected death in epilepsy).  In this open letter, the family asks for your support to help with our pioneering medical research.

Tom

Dear supporter,

The 21st of June marks the anniversary of the passing of our beloved son Tom at the tender age of 23 due to a sudden and unexpected seizure as a result of his epilepsy. Since his loss, we have tried to create good by supporting Epilepsy Society to help others benefit from treatment and research so that they can live a long life seizure-free, something sadly denied to our boy.

There are 3 epilepsy-related deaths every day in the UK, most of these are due to sudden and unexpected death in epilepsy (or SUDEP) and too many of these are young people like our son Tom. That’s why we are asking you to consider making a donation to Epilepsy Society, who are the world leaders in epilepsy medical research. Only with more research can we hope to bring optimum treatment for everyone with epilepsy and, ultimately, find a cure.

Everyone loved Tom. From the day he was born, he was an absolute joy – nothing fazed him. He idolised his big brother Sam and it was wonderful as their parents to witness their intense brotherly love. His ability to see good and enjoyment in everything was never more true than in his family and friends. His engaging quality for friendship remained with him all his life.

Tom’s epilepsy was never completely under control, but he took the drug changes and loss of his driving licence in good spirits and accepted that, for the time being, no other option existed. He just simply got on with it. He competed in Tough Mudder (a team-oriented obstacle course), worked hard in the gym, travelled to Australia for 3 weeks and his adventurous spirit never faltered. He even passed his HNC in Electronic Data Processing, but sadly didn’t live long enough to hear his results.

These are some of our favourite images of Tom (shown in the gallery below and in the video accompanied by one of Tom's favourite songs, 'These are the days of our lives', by Queen).

Ever since his passing, the whole family has been different. The glorious years of Tom’s life will never leave us or his friends, he loved his life. He would want us all to do the same – to enjoy every moment and rejoice in the fact that he existed in the world.

We know that the world was a better place when Tom was with us and we would do anything to turn back the clock and have him with us for another day. But the next best thing is to try to prevent others from going through such pain so we do hope you are able to make a donation to Epilepsy Society, who are doing all they can to work towards a cure for epilepsy.

Thank you for taking the time to read our letter about Tom and for your generosity.

Angela, Ian & Sam Scott

How your donation can help:

  • £25 could fund a blood test to establish the correct drug at the right dosage
  • £40 could enable us to take a DNA sample to help identify the cause of epilepsy
  • £100 could help us identify genes connected to epilepsy

You can donate online or by phoning 01494 601 410.

If you are affected by any of the issues raised in this letter, please call our helpline for time to talk and support. 01494 601 400 (national call rate).