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Important Update from the Peter Doody Foundation

On the morning of the 3rd of May 2019 our lives irrevocably changed when we found our son dead in his bed due to SUDEP (Sudden Unexpected Death in Epilepsy).

Shortly afterwards we set up the Foundation with the aim to support other young adults living with epilepsy as well as their family, friends and carers and to raise awareness not only of SUDEP but of the many obstacles and challenges that those living with epilepsy face on a day to day basis and those who care for them also face.

We are proud that to date we have supported many families and individuals with the provision of 30 seizure detection devices alerting loved ones when their child or partner are having potentially life threatening seizures to enable them to call for immediate emergency support. Something Andrew, Harry and I were never given the opportunity to do to safeguard our beloved son and brother Peter.

We have worked with Government both locally and nationally to assist with the improvement of epilepsy care and services with the greatest hope that one day epilepsy as a neurological condition is given parity in terms of research funding and service provision alongside other Neurological conditions.

There are still an estimated 21 epilepsy related deaths every week in the UK, nearly half of which are SUDEP, potentially avoidable deaths with under 20% of clinicians openly discussing SUDEP and epilepsy risks with patients.

We are approaching what will be three years since the charity was founded with the ensuing successful official registration with the Charity Commission in December 2019. During this time myself as Co-founder and Chair have committed myself daily to our foundational aims and goals but as Pete’s mum I now feel I need time away from the day to day running of the charity to grieve.  Andrew, myself and Peter’s brother Harry are also nearing the long awaited Inquest into Peter’s death which has been and still is an extremely difficult and painful process.

At our trustees meeting yesterday we took the decision, along with guidance from the Charity Commission to take The Peter Doody Foundation temporarily ‘off line’ as of the 1st April, not only for the personal reasons referred to above but to re structure and focus on the future of the charity.   As of today’s date we will not be undertaking any further alarm applications to enable us to complete our present applications in time for the off line date.

We are also considering our longer term goals in relation to epilepsy research projects particularly relating to SUDEP, its causes and to help prevent deaths. We therefore encourage and ask our dear supporters to continue fundraising for the Peter Doody Foundation, in Peter’s name and as part of his legacy and be assured that although off line the continued funding and donations will be directed specifically to projects that align with our aims and objectives and not disseminated in ways that do not.

As a family, alongside our trustees and friends we will also hopefully be looking to continue to personally fundraise mainly with ‘DoodFest’ and our 21k Purple walk and look forward to seeing you then and there.

In life Peter was so courageous in living day to day with his epilepsy. He was 17 just starting out on his exciting independent journey, moving to Leeds and starting his Degree in music production. Unless you have this cruel condition yourself we can never truly understand the strength it takes to push past seizure after seizure. As his mum, I could only imagine but am forever proud of his strength and what he went on to achieve and of the kind, caring man he became.

With much love and gratitude