THE family of a much-loved young man who tragically died last year is creating a legacy in his name to make sure other lives are not needlessly lost.
Peter Doody, from Wyke, was just 21 when he suddenly died in May last year after suffering a fatal seizure in the night.
His family have been left heartbroken by their loss and are now fighting to raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP) and ensure healthcare professionals discuss the risks with patients and their loved ones.
Today marks SUDEP Action Day.
Epilepsy affects more than half a million people in the UK each year and some are at risk of SUDEP, which accounts for 600 potentially preventable deaths annually.
Peter’s mum Joanne, 49, said: “I’ll never come to terms with Peter not being here. I believe very strongly had we been told about SUDEP, Peter would still be here with us.This is our second Christmas coming up without Peter, which is just absolutely heartbreaking.”
They say it’s an experience shared by others, with people not knowing about SUDEP until after a death. Peter, a talented young man who had studied music production at the Leeds College of Music, was diagnosed with epilepsy at the age of 17 after episodes where he would ‘zone out’.
Peter (left) with parents Joanne and Andrew and brother Harry
It then progressed to tonic-clonic seizures, which would often result in falls, injuries and A&E visits. Peter’s death came after a family holiday, taken to celebrate his dad Andrew’s retirement from the police force.
“That’s the day our world changed forever,” said Joanne.
“He was a beautiful, beautiful soul. His talent, the person he was, it’s wrong that he’s had to leave this world.”
His family went on to set up the Peter Doody Foundation in his memory to support young adults with epilepsy, break the stigma and normalise their experience after feeling that support wasn’t there.
Joanne said: “What it does do [the foundation], it gives an opportunity to say his name on a daily basis and, most importantly, no other parent then will hopefully ever unnecessarily have to experience what we’re experiencing.
"I understand it’s a difficult conversation to have with a patient about the risks around your epilepsy and sudden unexpected death in epilepsy. It is difficult, but we do need to know the risk as parents, carers. We need to know risks because then we can take real positive action.”
She added: “I think Peter is already going on to save lives, by the fact he was so loved, that’s why we’ve been able to raise the funds we have and hopefully continue to do so.”
One vital part of the foundation’s work is sending out NightWatch devices - an armband that detects epileptic seizures during sleep.
It then sends a warning to a caregiver via a wireless signal if it suspects a major seizure. It also provides a record of the wearer’s heart rate and motion data during the night to provide greater insight.
To donate to the foundation, click here
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