Parents aim to highlight signs of epilepsy risk
The condition claims hundreds of lives and a bereaved family is campaigning to raise awareness. Ruby Kitchen reports.
WITH A rare talent for music, Peter Doody had the prospect for the brightest of futures. He died suddenly in May, at the age of just 21.
His parents had not known it was a possibility. They were oblivious to the warning signs as his risk of sudden unexpected death in epilepsy was rising.
The pain is still raw, but they are determined to action change, in the hope that no other family is torn apart by the trauma they’ve endured.
“We would do anything to turn back the clock,” said father Andrew Doody, a retired detective with West Yorkshire Police.
“All the time the risk factors were rising for Peter, and we didn’t realise. We could have coped with the truth had we known.”
Every day, three people die from epilepsy in the UK, and it is among the top 10 causes of death for people under the age of 35.
Sudden Unexpected Death in Epilepsy (SUDEP) accounts for half of all deaths, yet research has found that less than 20 per cent of clinicians openly discuss its risks with patients.
These discussions, the Doody family argue, should be held as a rule, rather than just as a guideline, and they are fighting to raise awareness.
Peter’s condition was diagnosed at the age of 17, after episodes where he would ‘zone out’. Then came the ‘tonic clonic’
seizures, previously known as ‘grand mal’.
He was determined not to let the condition blight his life, his parents say, and progressed to university as planned, studying production at the Leeds College of Music.
But through this time, his seizures were worsening and he was becoming increasingly tired. The risk signs for SUDEP were there, and neither Peter nor his family were aware.
At the family home, in Wyke, building work is under way. They had started an extension, just before Peter died, so he could have his own space.
The irony is that it is no longer needed, says mother Joanne, glancing at the pictures of her two sons Peter and his brother Harry, now 20, that adorn the walls.
Her pain is achingly evident, as is Andrew’s. It had been a time for celebration, just before Peter’s death.
Mr Doody had taken early retirement, they were looking to the future, and had just days before returned from a family holiday to Turkey.
On the Thursday night, Peter had gone to bed as normal, but had been found by his parents the following morning. It’s a nightmare, said Mr Doody, that he relives every day.
“This is a trauma we have now,” added Mrs Doody. “It’s devastated our whole family. Everybody is absolutely broken. My boy, lifeless.
“Peter was just amazing – I know all parents say that, but he was, so kind and easy-going.”
The family has set up the Peter Doody Foundation as a support network for people with epilepsy between the ages of 19 and 30, and their carers.
They have already raised £13,000 for the foundation through festivals, charity events and donations. To find out more, visit peterdoodyfoundation.org
LIVING NIGHTMARE: Andrew and Joanne Doody feel they would have coped better if they had been aware of the warning signs which led to the loss of their son, Peter.