Former NRL star Shaun Kenny-Dowall has revealed the harrowing ordeal he and his partner faced after their daughter was born with a rare illness – striking just one in 7,500 – which forced her to undergo brain surgery.
Kenny-Dowall, 38, spoke exclusively to the Daily Mail about his daughter Kaia Lou being born with primary ciliary dyskinesia (PCD) – an incurable genetic disorder that affects the structure or function of cilia, the tiny hair-like structures lining a person’s airways.
The 2013 NRL premiership winner and his fiancée Georgie welcomed Kaia Lou in August 2024, but the diagnosis soon turned their joy into heartbreak.
‘We didn’t leave hospital for five months after she was born,’ Kenny-Dowall said.
Kaia is among the 50 per cent of PCD patients who also have situs inversus totalis – a condition where internal organs are reversed from their usual positions.
‘Kaia has had multiple procedures, including brain surgery. Although it’s a lifelong condition, we have a regular routine and have embraced life,’ added Kenny-Dowall.
Shaun Kenny-Dowall has opened up about his daughter Kaia Lou’s rare illness
The 38-year-old (pictured with fiancée Georgie and Kaia Lou) became a father in August 2024
Kaia Lou lives with the extremely rare condition primary ciliary dyskinesia
The former Sydney Roosters and Newcastle Knights star says the adversity his young family has faced had brought him closer to his fiancée.
‘I can’t sing her praises enough. She’s an amazing mum,’ he said.
‘We are doing everything that needs to be done for our daughter, and want to give her the best chance to succeed in life.’
Kenny-Dowall has now returned to Australia after a long stint playing for Hull Kingston Rovers in the UK, where he had moved to finish his professional career.
He became part of the coaching staff following his retirement, helping the club win the English Super League title in 2025, with former teammate Jared Waerea-Hargreaves playing on the field as a star prop.
Because he didn’t win any silverware during his stint as a player, he thought he had unfinished business and wanted to leave a mark.
‘I had so much knowledge to pass on and wanted to bring success to Hull KR,’ Kenny-Dowall said.
‘When I first signed with the club, I understood the potential journey of where we were going.
Kenny-Dowall was part of the Roosters’ 2013 premiership-winning team with his long-time friend Jared Waerea-Hargreaves
Kenny-Dowall (pictured with his family) has moved back to Australia after wrapping up his coaching career in England
The prolific try-scorer (pictured in Hull KR colours) took part in multiple seasons for the Super League club
‘It was an enjoyable process, and understanding the bigger picture, it was an awesome opportunity.’
Kenny-Dowall enjoyed success at the Roosters for several years before being sacked by the club in 2017 following a drug-related incident and ending up at the Knights.
The 38-year-old also faced a lengthy court case in 2015–16 after being charged with 11 domestic violence offences relating to an ex-girlfriend. He was eventually acquitted of all charges.
‘It wasn’t a nice thing to go through, and I learned plenty of lessons,’ Kenny-Dowall said of that difficult chapter in his life.
‘You see who your genuine friends are, and learn who has your back. Jared [Waerea-Hargreaves] has always been there for me.’
Kenny-Dowall’s relationship with the Newcastle Knights remains strong, with the prolific try-scorer taking up an offer to be the club’s Pathways Development Coach.
Kenny-Dowall also played for the Kiwis alongside Waerea-Hargreaves
SKD (pictured) has moved into a coaching role within the Newcastle Knights junior system
The footy great (pictured with fiancée Georgie) plans to marry the love of his life soon
‘[Newcastle] is a huge footy community. It’s a breeding ground for talent, and it’s been really great to come back,’ he said.
The Kiwi great scored 164 tries across his NRL career, with one standing out among the pack.
Kenny-Dowall looks back fondly on his game-winning try for the Roosters in their 2010 qualifying final escape against the Wests Tigers.
‘The 65-or-so metre run felt like 165m metres. It [scoring the try] was a special and defining moment,’ he said.
