EVERY parent’s worst nightmare is to lose their child, yet for one mum it was a nightmare she was forced to endure.
Peter Doody died suddenly in his sleep when he was just 21 years old.
His heartbroken parents, Joanne and Andrew, found his lifeless body in his bed – just days after returning from a family holiday.
Peter died on May 3, 2019 and four years earlier the youngster had been diagnosed with epilepsy.
His cause of death was recorded as Sudden Unexpected Death in Epilepsy (SUDEP).
Speaking to The Sun, Joanne said no parent should have to spend Christmas without their children – and she said more awareness needs to be raised about the condition.
I’m dead inside – I have to try and keep going
She has since set up a charity called The Peter Doody Foundation, which helps give family’s with epilepsy help and support.
Through the charity Joanne aims to give people NightWatch bands which help detect irregular heart beats – something she says could have kept Peter alive.
After the death of her beloved son, Joanne said Christmas is “just like any other day for her”.
“We used to go to the Lake District every year in the lead up to Christmas since the boys were little.
“It was a very magical time for us. Pete adored going. I don’t feel I can ever return there now, it’s too painful.
“The only decorations we have put up are at Peter’s grave. I feel a deep pain that Harry doesn’t have his big brother to open presents with and have a laugh with not only on this day but forever.”
Sudden Unexpected Death in Epilepsy (SUDEP)?
Sudden Unexpected Death in Epilepsy is connected with seizures and in particular Tonic Clonic seizures.
Experts say there is no one particular cause for SUDEP but said that it could have links to heart rate and breathing.
SUDEP is a rare condition and is estimated to effect around 1 in 1,000 adults with epilepsy each year.
The risk is greater or less depending on the amount of seizures a patient has and how well they can be controlled.
Research has show that Tonic Clonic Seizures put a patient at greater risk of SUDEP.
A Tonic Clonic Seizure can affect both sides of the brain from the start of the seizure.
You are also more at risk of SUDEP if you have night seizures and if you aren’t taking your epilepsy medication on a regular basis.
Joanne said as a child Peter had an “enquiring mind” and said it was this that led him to become interested in tech and music.
She said: “When he was 10-years-old I gave him an old work computer – that was the day I lost him to the virtual world.
“It was no surprise that when he finished school he enrolled to study a music production degree at Leeds College of Music.”
Before he was due to start his course, Peter was diagnosed with epilepsy.
Both Joanne and Andrew discussed with the college’s disability officer how Peter would be able to live away from home in order to make sure he was as safe as he could be.
While Joanne said her son enjoyed university, she said he was unable to have the same experience as everyone else because of his condition.
“He had to be really careful, he would have a fun time with his friends in the evenings but when they would go out to the club he would stay at home on his own mostly”.
Peter was just 17 when he was diagnosed and Joanne said it was “really out of the blue”.
Joanne said there was some hope as the adult brain continues to grow to the age of 25 – and she was told that there was the possibility that he could become seizure free.
“We really held on to that”, she said.
But sadly for the family – things only got worse.
“We learned early on that he couldn’t have a bath or cook because he might have a seizure.”
Joanne said he was given medication and anti epileptic drugs which would assist him in the seizures he was having.
She said: “Unfortunately he progressed to have Tonic Clonic seizures – he would fall to the floor and jerk and would have terrible facial injuries.
“He fell at uni once and landed on a set of dumbbells. His face was totally cut up and bruised.”
Joanne said these seizures were traumatic for both her and Peter.
“The first one I saw him have, that trauma will stay with me forever. He turned blue and I thought he would die.”
Despite the seizures, after college Peter went on to work at a tech store.
Leading up to a family holiday to Turkey, Joanne said Peter became tired.
She said he would come home from work and then go straight to bed – she thought he was just tired from working full time.
On the holiday Joanne said she became really close to Peter and the two would stay up talking to each other.
“Me and Pete connected, something shifted in the relationship.
“He was usually subdued, a closed book, but he really opened up.
“I remember he had a full face of hair and I remember reaching up to him and cupping his face and just felt overwhelming love and pride.”
What is NightWatch and how can it help people with epilepsy
NightWatch is a comfortable armband that detects epileptic seizures during sleep.
It is a clinically proven system that sends a warning to a caregiver via a wireless signal if it suspects a major seizure and allows them to take potentially life-saving action.
It uses a unique combination of heart-rate and movement in patients to recognise seizures with a high degree of accuracy.
As well as alerting carers of potentially serious seizures during sleep, NightWatch has an online portal which provides a record of the wearer’s heart rate and motion data during the night.
This provides patients, carers and neurologists with greater insight around the intensity and duration of seizures, which is important for the ongoing care of people with epilepsy.
Joanne said that this information can help parents and those with epilepsy make it easier to have better-informed conversations with healthcare professionals.
How can The Peter Doody Foundation help?
Joanne set up the foundation after Peter’s death.
The foundation helps to provide day to day holistic support and help prevent other sudden unexpected deaths from epilepsy amongst young adults.
On the last day of the trip the family went on a boat excursion and Joanne said she looked up at the sky and remembered thinking how good life was.
“I thought that things might finally change for us and hoped his epilepsy would get better, I had suffered with depression and anxiety and things were looking up.”
The family flew home and Joanne’s husband Andrew was due to have a meeting with the chief constable for his golden handshake – which is given when a police officer finishes his services. Joanne was also due to go on a trip with friends.
On the Thursday evening the family went to bed as normal but on Friday morning the family had been up for a little while and thought it was strange that Peter was not yet awake.
Andrew went into Peter’s room and what followed next was the start of the family’s nightmare.
Joanne said: “I heard a scream – I can’t explain the sound – those were my last few seconds of life.
“I rushed out of bed and saw my husband screaming like a wild animal.
“I got into bed with Peter, I was numb and just started stroking his head and chest and I told my husband to call for an ambulance”
Soon Joanne’s parents and her sister turned up – they then called an ambulance.
Joanne said: “We knew he was gone. When the lead paramedic came in her face just froze.
“Then she just got into her role and said we had to get Peter off the bed.
“Peter was taken out in a black bag, you’re only meant to see that in films, I didn’t want to let the van go.”
NOT IN VAIN
Joanne now says she doesn’t want her son’s life to be in vain and wants to help other families who have members who are suffering from epilepsy.
They have now set up a charity which aims to provide families with a nightwatch monitor.
This can be used in the rooms of people with epilepsy and detects heart rate – Joanne believes that if Peter would have had this then he may not have died from a seizure – as his irregular heartbeat would have been detected.
She said: “We didn’t know he was having that many seizures and if we had this then we would have been alerted.
“It records both movement and heart rate during the night and you can take into consultations and show specialists what’s really going on during the night so they can help with treatment.”
Joanne said that having knowledge on the subject is power and wants to help other parents – so they don’t have to suffer the way she has.
She said: “I do not want another mum going to their child’s room and finding them – not on my watch.
“I’m dead inside – I have to try and keep going.
“There is inadequate support for grieving parents. I don’t want anyone else to live this hell”.