At age 14, Ryan Eccles has been through a lot more than most youngsters.
"He doesn't have the same freedom as other kids his age," his mum Christine Eccles said.
Ryan and his mum shared their story to mark the end of epilepsy awareness month and highlight the stigma surrounding the disease.
The Eccles, of Greta in the Hunter Valley, live a life that few people could imagine.
"Nobody really knows or understands the way you have to live. There is so much risk in everything Ryan does due to his condition," Mrs Eccles said.
"Sadly, it doesn't help that some people are just horrible out in the real world."
She said there's a lot of discrimination.
"You get isolated. You lose friends because you can't go to the same things that others go to with their kids."
Ryan said the hardest part for him was "not being able to do the simple things that other people take for granted".
"It's things like walking down stairs and going out and about on my own, or even being left on my own at home for a bit," he said.
"I can't do any of that. Somebody always has to be with me."
He can't do what other kids do, but has "learnt to have fun in other ways".
"It's learning to adapt," he said.
He wishes he could "know more people like myself".
"It'd be nice to meet people like me and also to let them know that it's OK."
Ryan first had an epileptic seizure at the age of 11 months.
"From then we entered into a different world," Mrs Eccles said.
"In 14 years of horrific seizure activity and numerous ambulance rides, he has only got upset twice because of his condition.
"He has a very bright outlook, wicked sense of humour and is clever and special.
"Even though it has been incredibly bad over the years, there are still good moments and small wins."
Mrs Eccles said Ryan's primary school years were initially "really tough and lacked proper support".
"His high school has been fabulous and very empowering, with a great 'can do' attitude towards him.
"They include him in everything and don't treat him like a problem.
"There needs to be more done in our community to ensure that kids like Ryan can participate in activities and be supported while doing so."
Epilepsy Action Australia CEO Carol Ireland said epilepsy is often misunderstood as "just seizures".
Ms Ireland said fear, misunderstanding, discrimination and social stigma had surrounded epilepsy for centuries.
"It's often referred to as a forgotten disease," Ms Ireland said.
She said the unpredictability of the disease was difficult for people to deal with.
"They never know when they might have that next seizure," she said.
About 250,000 people in Australia have epilepsy.
Two-thirds of these people become seizure-free with medication, but a third don't gain full seizure control.
There are many different kinds of seizures.
"Sometimes people that have seizures are mistaken for being intoxicated or under the influence of drugs," Ms Ireland said.
"Not all seizures are recognisable to the general public. Awareness is super important."
Ryan has drug-resistant epilepsy, a complex condition.
"The kids with drug-resistant epilepsy are the ones in the absolute hardest basket," Ms Ireland said.
"They've failed all the medications and life can be really tough with lots of seizures."
Ryan has tried many treatments.
He also underwent surgery for "vagus nerve stimulation", an accepted procedure for his condition.
"It emits an electrical stimulation into his brain every minute to try and offset seizure activity," Mrs Eccles said.
It's a pacemaker-type implant in his chest wall, with wires that go through his neck and into his brain, attaching to the vagus nerve.
"Before he had the surgery, I sold it to him on the basis that he'd be part Terminator," she said.
"He was very 'down' with that, he thought it was really cool."
A magnet can be swiped over the implant in his chest wall to stop the tonic-clonic seizures, also known as convulsions or "grand mals", once they have started.
A tonic-clonic can last over five minutes and the recovery can take hours.
"Within 10 to 20 seconds of using the magnet, that seizure stops," Mrs Eccles said.
Ryan had been having about 1000 seizures a month.
"Now we're probably down to about 400 to 500," she said.
He also has five anticonvulsant medications twice a day and monthly immunoglobulin infusions at John Hunter Hospital.
"Nothing stops the seizures, it just reduces them," she said.
"But we feel very fortunate to have amazing teams of specialists in Newcastle and Sydney who are always researching and exploring new avenues that might help Ryan and others like him."
She said the tonic-clonic seizures can involve a loss of consciousness, bodily jerking and violent muscle contractions.
Ryan also has "drop seizures" that make him collapse.
The worst ones, called "cluster seizures", are repetitive. He doesn't regain consciousness in between them. They often lead to an emergency department visit.
"It's awful - hell on earth. You worry sometimes he's going to die," Mrs Eccles said.
She and her husband were police officers in Northern Ireland before they moved to Australia.
"We were used to growing up and working in a terrorism environment. There were always a lot of bombs and shootings. The abnormal became normal.
"Ryan's condition is unfortunately like the abnormal has become normal.
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"We don't live like a normal family, but it has become normal for us."
