IT always starts with the black fly.

A little dot that suddenly appears without warning and with overwhelming force late at night, after a gym session or, on this occasion, during an NRL match.

And every time, the little fly has a terrible habit of inching closer and closer towards Peni ­Terepo’s brown eyes.

The 22-year-old is acutely aware of the inevitable and potentially dire consequences of the fly’s sudden arrival — a seizure is coming.

Still, the Eels forward ­instinctively tries desperately to swat it away with his meaty hands.

It had been three years since Terepo had stared down his nemesis.

media_camera Parramatta NRL player Peni Terepo.

But no amount of time can ­soften the overwhelming sense of urgency that washed over him as he jogged toward the Eels’ interchange bench on a cool Monday night in May.

After a strong first-half stint tearing away for the Eels in their round-nine clash with the Sharks at ­Parramatta Stadium, Terepo was replaced and given a chance to rest just before half-time by coach Brad Arthur.

But he didn’t even have time to sit down.

The fly had arrived.

Always prepared and very well aware of the ­importance of ­taking his twice-daily medication, the consequences of Terepo uncharacteristically forgetting to wash a tablet down with his milk and Weet-Bix that morning were about to be confronted.

“I came off the field and I could feel the fly flying around,’’ he said.

“It was just before half-time and so I ran straight to the sheds. On the way, I told the physio, ‘I’m about to have a seizure’ and I just blacked out there on the dressing room floor.’’

As the Eels trotted up the tunnel for their half-time pep talk, one of their own was ­dramatically convulsing near the dressing room lockers.

media_camera Parramatta prop Peni Terepo in action during his SG Ball days.

Concerned coaching staff hurried around Terepo, trying to support him as his 112kg frame bounced dangerously towards the wooden bench seats.

They folded thick towels to support his head, stopping it from smacking directly against the rock-hard floor.

The medication Terepo had raced to collect from his kit bag lay spilt on the floor beneath him — he was just 20 seconds too late.

He couldn’t stop the fly from taking over his body.

The rest of the squad were given their instructions for the second half by Arthur in a room next to where Terepo was being supported through his seizure.

As Jarryd Hayne led out his team for the second half, highly respected club doctor Stephen McNamara, who has been at the Eels for 22 years, calmly administered Terepo’s medication intravenously.

media_camera Peni Terepo scores for the Eels.

It would be near on 40 minutes from when Terepo ran for his kit bag until he ­returned to a relatively clear state of consciousness.

Terepo, who despite feeling as though he’d just run a marathon due to the energy he’d spentduring the seizure, emerged unscathed — albeit complaining about letting his teammates down.

“I was pissed off. I felt like I needed to be out there,’’ he said.

Terepo was diagnosed with epilepsy — the world’s most common serious brain ­disorder — at age 13.

He is the first professional rugby league player to come forward about his condition, suffered by about 800,000 Australians, since league Immortal and Queensland legend Wally Lewis admitted in 2009 he’d kept his battle with epilepsy secret for 20 years.



media_camera Wally Lewis gives Allan Langer a kiss on his head.

media_camera Wally Lewis’ brain scan.

He is now a major advocate for epilepsy awareness.

“Outside the family there were four or five people that knew about my situation,’’ Lewis said.

“It’s something that I tried to deal with as little people knowing as possible, which to Peni’s credit, isn’t what he’s doing.’’

Born in New Zealand, Terepo’s first seizure occurred when he was at High School.

“It happened after PE, I was sitting down in the change rooms and it looked like there was a fly flying around,’’ Terepo said.

“I swear it was a fly.

“And this fly just kept getting closer and closer, closer and closer to my face and so I started to wave it away, with my hand. And then all of a sudden it took over me and I blacked out.

“I woke up in hospital and I was diagnosed with epilepsy and it was something that I’ve had to live with ever since.’’

Terepo says “there isn’t enough numbers” to count how many seizures he’s experienced over the past decade.

media_camera Parramatta NRL player Peni Terepo pictured with son Wesley.

But he says, the three-year gap between his last two, proves that he’s winning the battle.

One of the major triggers for seizures among people diagnosed with epilepsy is fatigue.

Or in Terepo’s case most recently, failing to take the required medication.

When he was first diagnosed as a teenager, Terepo’s parents were initially worried that given the demands of training to become an elite footballer, their son’s dream of playing in the NRL may never eventuate.

However, Terepo was buoyed by the advice of doctors who prescribed him to a program of daily medication, a strict diet and a target of at least eight hours sleep each day.

“But if I was doing every wrong thing, I wouldn’t have kept playing and I wouldn’t have made it here,’’ Terepo said.

“If I didn’t stay on my medication, if I didn’t eat well, if I didn’t sleep well, I would’ve had to go into major surgery.’’

media_camera Parramatta NRL player Peni Terepo with son Wesley.

This is why Terepo wants to tell his story.

He wants to explain why, the very next day after his seizure in May, he walked into Parramatta Stadium and handed over the car keys.

By law, he is not able to drive a car for six months after a seizure.

And while it’s an inconvenience, it’s another reminder for Terepo that he can’t afford to overlook taking his medication.

The loving father of two-year-old son Wesley also wants to break down the social stigma associated with epilepsy, which ultimately led to Lewis keeping his own battle hidden.

media_camera Peni Terepo attempts to ground the ball.

The embarrassment, Terepo says, which is felt by many sufferers, underlines the statistics of a recent epilepsy Foundation survey, which indicated a marked increase in anxiety and depression among sufferers.

But above all else, he wants to prove that life can go on and that dreams of becoming an NRL player can be achieved, even if you’ve been diagnosed with epilepsy.

“I’m proud of myself, to be who I am with this health issue,’’ Terepo said.

“I think its important for young kids as well just to see someone who has made it, who does have this problem.

media_camera Parramatta NRL player Peni Terepo.

“They don’t have to sit at home and worry about not playing because of this illness. It doesn’t have to be rugby league, it can be anything active.”

“It’s important for parents as well because personally I feel parents are worried that their kids won’t be able to do what other kids are doing.

“My parents were worried that this could’ve stopped me from playing.

“The only player I knew of who had Epilespy was Wally Lewis.

“When I heard about his story, it inspired me. What he has become and what he’s achieved made me realise the sky’s the limit, nothing can stop anyone who has got epilepsy.’’

* For more information on epilepsy go to www.epilepsy.org.au