In many ways, Ethan Sheehy is just your typical 11-year-old boy.
He’s a “happy kid” who loves playing with friends at his Sydney school, talking on the phone, pulling faces and winning burping competitions.
He also suffers from complex uncontrolled epilepsy — a central nervous disorder that disrupts brain activity and causes him to have seizures every night.
The frequent severe trauma to his brain has left him with an intellectual disability.
Diagnosed just after his second birthday, Ethan has been admitted to hospital numerous times and is on his seventh medication.
Although it is the best one so far, it has not been able to bring his seizures under control properly, the boy’s mum Jacqui Sheehy, 37, told Yahoo News Australia.
Ethan’s treatments and persistent seizures — including suddenly falling to the ground in the middle of a shopping centre — have kept the 37-year-old on her toes over the years, but on the morning of February 9, her worst fears came true.
'I knew he’d had a seizure'
Like most weekdays, Ms Sheehy went into Ethan’s room around 7am to wake him up for school.
“I went into the kitchen and started getting ready for work and preparing his lunch,” she said.
Fifteen minutes later, she entered his room again to check on him and found the unconscious 11-year-old lying face down in his bed.
“He wasn’t in the same position. As soon as I saw him I knew he’d had a seizure,” she said.
Ms Sheehy, who had completed a CPR course through her work just months earlier, launched into action.
“I grabbed his shoulder and rolled him over and he was all blue,” she said.
“So I gave him two breaths straight away after screaming his name a couple of times.”
Unable to find a pulse, the 37-year-old rang Triple-0 for help, moved Ethan to the floor and began chest compressions.
She performed CPR on her son for more than 14 minutes until paramedics arrived. The 11-year-old’s heart began beating again, but his breathing remained unstable.
“I went into survival mode on is behalf,” the mum said.
Ms Sheehy’s four-year-old daughter Everly was in the home at the time and unlocked the front door for first responders as her mum frantically tried to save her son’s life.
Ethan's brain has 'widespread' damage
Ethan was intubated and rushed to the ICU at Sydney Children’s Hospital, where he remains. He is unresponsive, but not comatose.
An MRI of his swollen brain has since revealed “widespread damage to the right side and a little to the left”, Ms Sheehy said.
Doctors have been hoping Ethan would wake up on his own, but he hasn’t shown a lot of progress.
On Thursday, they told Ms Sheehy footage from her epilepsy monitor in the 11-year-old’s room showed he had suffered Sudden Unexpected Death in Epilepsy (SUDEP).
SUDEP can occur during or immediately after a seizure and is “when a person with epilepsy dies suddenly and prematurely and no reason for death is found”, according to SUDEP Action.
SUDEP deaths are often unwitnessed, with many occurring at night.
For every parent who has a child with epilepsy, it’s their worst nightmare, Ms Sheehy said, urging parents to undergo first aid and CPR training.
“It’s just so important. As a parent of a child with a disability, you need to prepare yourself for the worst, even if you don’t really think it’s going to happen. You never know what could happen,” she said.
Doctors have told Ethan’s family next week they will try and remove the tube from his throat and see if he can begin swallowing on his own. He can breathe unsupported but the part of his brain that controls his ability to swallow is damaged.
The rest is up to Ethan, they said.
Although they are hopeful for a “miracle”, Ms Sheehy’s brother Steven told Yahoo News Australia they “might have to think about letting him go”.
"He may not be able to eat or drink on his own again. What kind of quality of life is he going to have?" he said.
Steven has created a GoFundMe to help his sister pay medical bills and care for her son.
Anyone who wants to help raise awareness about epilepsy and show support for those living with it can take part in Purple Day on March 26 by wearing a lavender coloured item.
Do you have a story tip? Email: firstname.lastname@example.org.