A FAMILY is continuing their fight to raise awareness after the heart-wrenching loss of their son to Sudden Unexpected Death in Epilepsy (SUDEP).

Peter Doody, from Brighouse, was just 21 when he tragically died in his sleep.

A talented musician, he studied at Leeds College of Music for a degree in Music Production. He played guitar, banjo and keyboard and was part of a band formed with friends at Brighouse High School.

His untimely death has left his loved ones devastated, but they are now determined to create a legacy in his name by raising awareness, providing support, and reducing stigma through The Peter Doody Foundation.

Bradford Telegraph and Argus:

His mum, Joanne, said: “My husband and I found him in his bed, and from that moment on our lives have changed irrevocably. The pain is unbearable.

“Peter was diagnosed with epilepsy when he was 17. As we are only finding out now, Pete was in an age range where he was at increased risk of SUDEP.

“SUDEP is when a person with epilepsy dies suddenly and prematurely and no reason for death is found.”

His family say they did not know about SUDEP and are discovering the “distressing and painful” fact that it also the case for many other young people with epilepsy who have sadly died.

They now want to raise awareness of SUDEP and ensure healthcare professionals discuss the risks with patients and their loved ones.

Joanne added: “As part of Peter’s legacy we have set up The Peter Doody Foundation with the aim of raising funds to provide practical and emotional support to other young adults with epilepsy, as well as their friends and families.

“From our own personal experience, we found little if no emotional or wellbeing support for Peter and ourselves while he was alive.”

She said for those living with epilepsy, the condition has a “profound” impact and they often experience isolation, feel stigmatised and a lack of understanding of their condition can - and does - affect mental health.

“As parents, siblings and friends witnessing their loved ones having a seizure this is also greatly distressing. The lack of provision to support those in need out in the community or on a face-to face basis, present Covid regulations permitting, needs to change,” she said.

“That is why the Peter Doody Foundation is passionate and committed to provide support including counselling.”

While Joanne says there is a “long journey ahead”, she has vowed to never stop to ensure another family does not experience the same loss and heartbreak.

As part of their plight to raise awareness, the foundation’s second Purple Walk will be held on Saturday (July 24), covering 21k in acknowledgement of the 21 epilepsy-related deaths each week in the UK.

All are welcome to join and the walk will begin at 9am, setting off from The Wyke Lion pub, Whitehall Road, Wyke.

Donation buckets will be rattled along the way and the foundation would be grateful for any donations, particularly as the Covid-19 lockdowns have meant fundraising opportunities have had to be put on hold.

Funds raised will help to provide NightWatch monitors, a seizure detection alarm which Peter’s family say they would have valued the opportunity to have known about and used, had they known about SUDEP.

It monitors heart rate and motion, warning care givers remotely in the event of possible epileptic seizures during sleep, but also providing data to give an insight into intensity and duration of seizures.

Joanne added: “The unit is not cheap at around £1,200 but we are able to provide these alarms with the funding we have raised and our long-term aim is to continue to do so.

“That is why every penny kindly donated to us is so desperately needed. We need funding to help us to continue to support our wonderful young men and women so courageously living with epilepsy in ways those who don’t have this condition could ever understand or appreciate its complexities.”