Aamira Renouf, the niece of league legend Steve Renouf, fighting rare childhood disease

Memory loss and seizures are just some of the effects of a rare and cruel disease that threatens to end the career of a sporting prodigy from one of Australia’s most decorated families before it has even begun. Go inside Aamira Renouf’s battle here.

Sunshine Coast sporting talent Aamira Renouf. Picture: Patrick Woods.

A cruel disease threatens to end the career of a sporting prodigy from one of Australia’s most decorated families before it has even begun.

Aamira Renouf is one of Australia’s most promising young athletes who has the blood of champions running through her veins.

But something else is happening inside the body of the niece of rugby league legend Steve Renouf that not only threatens her career prospects, but her life.

The 16-year-old is the victim of a cruel disease that affects just five children in Australia, Limbic Encephalitis.

The disease is characterised by confusion, depression, agitation, severe short-term memory deficits, partial-complex seizures, sleep disturbances, fatigue and dementia.

It has also shortened Renouf’s life expectancy, with her family unsure how long they have with the spirited teenager.

Aamira Renouf with her father Donald Malone.

The Sunshine Coast resident, Caloundra State High School student and proud Indigenous woman is a star athlete who in recent times has been part of numerous high level sides.

These include NRLW academy teams, Sunshine Coast Falcons, Caloundra Sharks, QAS Rugby 7s academy, Queensland Oztag teams, Queensland volleyball teams, Queensland rugby league teams, Queensland rugby 7s teams and the Australian Schoolgirls rugby 7s merit side.

Renouf was born into a sporting family with her dad Donald Malone widely regarded as one of the most electrifying players to ever grace a Queensland Cup rugby league field.

Her cousins are also Brisbane Broncos outside back Selwyn Cobbo and former cross code star Will Chambers.

When Renouf was 14-years-old she started having frequent pins and needles and kept asking her mum Natalie questions like ‘where are we? and ‘what are we doing?’.

Natalie and her daughter Aamira.

“I remember thinking it was odd when she kept nagging and asking me questions that I knew she knew the answers too,” Renouf ‘s mum Natalie Sandow said.

“When I was her age I remember getting bad migraines so I thought she might’ve been going through something similar but then at one stage we were in Rebel Sport buying boots and Aamira couldn’t figure out what was happening, how we’d gotten to the shops and so on.”

Natalie kept tabs on her second eldest daughter but said it wasn’t until their grandfather passed away that she truly started to worry.

“We were all at the house when he passed, I spoke and Aamira attended his funeral with the rest of our family but a month later she asked where he was,” Natalie said.

“That’s when I started to question her health a bit more and a short time later my grandma went to a physic who pointed Aamira out in a photo and said she had pressure on the brain.”

Aamira Renouf in hospital.

Natalie tried to push her local doctors for testing or scans to be done.

“The doctors wouldn’t listen to me, told me she had anxiety, was fatigued from all her sports and wouldn’t allow us to get a scan done on her brain,” Natalie said.

“I had to go through our GP and we eventually got a scan done before they called us back for another and I started to get really worried.”

Doctors first said Renouf had a brain tumour and she was quickly rushed to hospital before getting a second diagnoses.

They found she had inflammation on the brain but also diagnosed her with Limbic Encephalitis.

“When I asked the neurologist what having this disease meant for Aamira’s life expectancy, she wouldn’t answer me and she instead said ‘let’s focus on the treatments’ and told me not to google it which I haven’t to this day,” Natalie said.

Aamira Renouf in hospital.

Natalie said the initial months were a major hurdle for her and her family but Renouf couldn’t understand why she wasn’t allowed to play sport.

“She was really sad, her whole life has been on the sidelines watching her dad or siblings or on the footy field playing herself so it was really hard to say no,” Natalie said.

“Her struggle is retaining new information as she could have a conversation like normal, turn around and take five steps and completely forget what she just talked about.

“It causes her extreme fatigue and she also has seizures most days.

“Some are full body seizures and others are called silent seizures where her brain shuts off in a way, she feels funny and forget what she’s doing.

“The most we’ve clocked has been 24 in one day.”

Aamira Renouf and her family.

Renouf began a similar treatment plan to leukaemia patients to try and attack the disease but that didn’t work.

“We’ve tried a few different courses of treatments now but nothing has helped,” Natalie said.

“At the moment she’s not on any treatment, she’s still taking her seizure tablets but is in constant back and forth with her neurologist to see what other avenues we can explore.”

Renouf’s neurologist, Dr Adrianne Sinclair, or as Natalie likes to refer to her as ‘an absolute godsend’, quickly encouraged Renouf to continue playing sport to help her disorder.

“Dr Sinclair explained it would be a lot harder for Aamira to get a part-time job or study as the struggle is retaining or even learning any new information,” Natalie said.

“She said that playing sport activates the brain waves and since Aamira has grown up playing sport she knows how to run fast, how to tackle, how to pass a footy and all the rules of the game.”

Aamira Renouf and her brother Deyrell.

Natalie said despite Renouf being back on the sporting field, they still had their challenges.

“She can have a seizure on the field in the middle of a game,” Natalie said.

“When that happens she knows to remove herself and always puts her health first as she usually walks off the field, sits down and has some water to compose herself.

“Sometimes she sits off for the rest of the half or match, sometimes it’s five or 10 minutes but it’s just whenever she feels she’s okay as she knows her body and her brain best.”

Natalie said she is constantly reminding Renouf of any events, matches or carnivals by repeating the same conversation over and over.

“Sometimes it’s okay but other times like the day of Schoolgirls 7s I woke her up, told her to get ready and she had no idea what for,” Natalie said.

“There’s other mornings where I’ve had to call coaches and explain to them that Aamira has had a seizure or she’s not feeling herself and she wouldn’t be able to play.

“It really is a day-to-day thing we have to monitor as she can be amazing one day and a shadow of herself the next.”

Aamira Renouf in action for the Sunshine Coast Falcons. Picture: Mitch Ensby/QRL.

In May, Renouf represented the Sunshine Coast regional schoolgirl rugby 7s team at the state champions.

Despite having two full body seizures within 11 hours and missing the opening day, Renouf went on to earn selection as a shadow player for the Queensland under-16s team.

The speedy outside back later opted to play for the Lloyd McDermott Rugby 7s Development Team, ‘the Lloydies’, which consisted of junior Indigenous athletes from across the country.

The Lloydies were a competitive force in all five of their matches as Renouf was later named in the under-16 Australian merit side.

“It was such a fun experience, I always like meeting new people and playing footy,” Renouf said.

“I feel I did pretty well, making the Australian team is very exciting and I’m really proud to have been selected.

“I was really surprised when my name got called as I wasn’t expecting anything but it’s very cool to be picked as I love representing my culture and my people.”

The Australian U16 Merit Team during the official photograph on 5 July. Picture: Anthony Edgar

Natalie said to put it in perspective, two hours after Renouf was selected for the Australian team she told her to call and tell her grandma and tell her the good news but Renouf couldn’t remember what the good news was or why she was calling.

“I do praise her and post her on Facebook a lot because only I truly know how much she struggles,” she said.

“I post her achievements not to gloat but primarily to serve as memory purposes because she relies on a me a lot and I don’t know how much longer she’ll be with us.

“I have been her pillar of strength through it all and it’s why I hide my tears from her otherwise she could crumble herself.

“People have no idea how hard every day is for her and why sport is that security blanket for her, it’s where she finds comfort.”

Aamira Renouf (Lloydies) make another of her numerous do-or-die tackles against her Queensland White opponent and friend Lilly Bain at the Australian Schools Rugby Championships. Picture: Rachel Wright

Natalie said she was extremely proud of her daughter.

“She’s such a great friend and really gets along with everyone,” Natalie said.

“She has that personality where she attracts anyone and everyone and when she’s on the field I call her the smiling assassin because whether she’s running down the wing with the footy, trying to chase someone down for a tackle, goalkicking or shaking hands at the end of the game she’s always smiling.

“She’s not a player that tries to score the most points or be a showpony in any way, she just loves player sport so for the moment we’re just trying to keep her on the sporting field for as long as we can.”