A man could suffer from four seizures a night as his battle with epilepsy worsened, an inquest has heard.
Jonathon Brennan, from Ellesmere Port, died on April 8 2018 after suffering a cardiac arrest as doctors tried to sedate him following a long spate of seizures. The 28-year-old had been admitted to the neurology and neurosurgery specialists in February after years of failed attempts to improve his epilepsy had left him severely physically disabled, unable to feed himself or cut up his own food.
At his inquest today, his mum Ruth Brennan told the court how Jonathon's epilepsy was mild at first, increasing from "one or two" seizures a year when he was nine-years-old to 40 a year in his mid-teens, before skyrocketing to as many as four a night in his 20s.
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She said: "It all started when Jonathon was eight. Jonathon had a spaniel, and when I heard something at 6am I assumed it was the dog. Something made me go to Jonathon's bedroom and I found Jonathon unconscious in his bed."
Jonathon continued to suffer from night-time seizures throughout his childhood, and he made frequent visits to The Walton Centre. As his condition worsened, it began to affect his school life.
Ruth said: "Jonathon went to the fun fair with a friends from school, and because Jonathon's seizures were nocturnal seizures not a lot of his friends knew. Jonathon got on a ride, which was a stupid thing to do with the noise and the lights, but he was just being a normal kid.
"And Jonathon suffered a seizure, and everybody panicked and an ambulance came. It was the funfair, so you can imagine half the school was there. Jonathon was 15, and these horrid, horrific things - you'd call it spamming these days - start coming through. He was horrified.
"Jonathon was brilliant at science and history and he'd chosen his (GCSE) options. The triggers for Jonathon's epilepsy were sleep and stress. I don't know whether it was the stress of everything going on. The nocturnal seizures started to increase again, and Jonathon was very tired going to school, and day time seizures started."
When he was 18, Jonathon received a vagus nerve stimulation implant, a small pacemaker-like device which sends electrical pulses to the brain to reduce seizures, however, his epilepsy did not improve. He also continued to suffer from weakness and discomfort on his left side, which one doctor identified as a sign of a possible right brain injury.
In his early 20s, he underwent a brain scan which revealed cortical dysplasia, a brain defect identified as one of the most common causes of epilepsy. Ruth said she later discovered that, when her son had been referred to The Walton Centre by the Countess of Chester Hospital when he was 15, instructions had been given for a brain scan. Ruth claims "it was never followed up, and nobody told the family or Jonathon".
Ruth said: "Jonathon needed his dad and I. He couldn't be left alone. He couldn't do a normal thing like just popping to the shop to buy a newspaper. Jonathon would have done - it was me, the overprotective mum. He still went to the match with his dad. He still cooked with me, because cooking was a passion - it's all from scratch in my house. Jonathon went fishing, played golf, went to five a side, but he still suffered from epilepsy. He was determined that he was going to beat this."
In 2016, when he was 25, Jonathon had neurosurgery to remove the part of his brain where seizures occurred - but instead of getting better, his condition immediately worsened.
Ruth said: "It was the Saturday afternoon we left The Walton Centre and we got stuck in all this traffic going through Everton. We were stuck for hours and we were so relieved to be home. Jonathon went to bed about midnight. I sat with Jonathon. I said to my husband I was going to get a drink, and he said he'd listen to Jonathon, and he called me, and Jonathon had had a seizure. It didn't stop. It was the first time Jonathon ever entered status epilepticus (a seizure that lasts longer than five minutes). I was absolutely hysterical.
"The ambulance came and the room was full of vials of god knows what. I just thought I was going to lose my boy. It seemed to take hours to get to the hospital. I really thought I was going to lose him."
Jonathon was taken to the Countess of Chester Hospital, where he suffered another major seizure following an infusion. The court heard his condition improved slightly towards the end of 2016, but declined again in 2017, with both prescription drugs and cannabis oil having no effect.
He was hospitalised in late December 2018 after admitting he was taking more than his prescribed amount of pills in an attempt to stop the constant seizures, and in February it was agreed he would be admitted to The Walton Centre for further treatment and monitoring.
The inquest continues.
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