Rylee Sayer was already a NZ para swimmer when, at 15, she lost her right arm to cancer. At 17, she’s off to the world championships in Singapore.
Para swimmer Rylee Sayer says she has one approach to competitive swimming: “Just go fast.”
The Matamata teenager is fast. So fast that, just days after turning 17, she will compete at the World Para Swimming Championships starting in Singapore on September 21 as the only Aquablack to qualify in five events. She is also the youngest in the team.
The highly competitive athlete was born with a rare genetic condition called tuberous sclerosis complex, which causes non-cancerous tumours to grow in organs such as kidneys, brain and lungs. It can lead to a range of issues including epilepsy and learning difficulties. In Sayer’s case, it means a form of cerebral palsy that has weakened her left side. It also affects her memory and cognitive abilities to the extent she finds it difficult to comprehend complex instructions and pace her races. Although she loves competing, she must keep things simple: race fast.
In April, Sayer clocked the then-fastest time in the world this year for her para-category in her favoured 50m freestyle event, so she hopes to reach finals in Singapore.
“I’m pretty excited, and nervous. I never thought I’d qualify in five events,” she says.
Could she get a medal? “I’d be shocked if I did – but I never really think about medals, as that’s a lot of pressure. I try to avoid that pressure.”
Not a sporting injury
Two years ago, Sayer didn’t think she’d qualify at all. Getting there has been a journey of hospital visits fused with resilience, positivity and determination – and a few tears.
In mid-2023, Sayer had pain in her right shoulder that was attributed to a swimming injury. When it didn’t get better, her mother, Amanda, sought medical treatment through multiple providers without success. It took until October that year to get a diagnosis, and it was shocking news.
Sayer had an aggressive form of bone cancer – an osteosarcoma – which can grow rapidly and spread to other parts of the body, such as the lungs.
“We had never expected that this lump under her arm that was treated as a swimming injury for three months was cancer,” Amanda says.
The cancer was in Rylee’s right proximal humerus, the “ball” of the shoulder’s ball-and-socket joint, where the rotator cuff tendons attach.
“I’ll never forget the day I was told that a big part of my right side was being removed because my cancer was too aggressive,” she says. “I was diagnosed just after my 15th birthday.”
Sayer went online to learn more about bone cancer and what a right forequarter amputation was, but could not find anyone close to her age who had been diagnosed. She also researched what she might look like after the procedure. What she saw was daunting for a teenager.
“It was a bit scary, to be honest,” she says. “I saw mainly old people in black-and-white photos.”
On November 2, less than a month after diagnosis, Sayer had surgery at Auckland’s Starship Hospital to remove her right arm, clavicle, shoulder and some back muscles. She was right-handed. While in hospital, she spent hours walking up and down the corridors to maintain her fitness.
Her staples were removed before Christmas and on January 5 last year, Sayer’s oncologist gave her the all-clear to return to swimming – on one condition: if she felt unwell, she was to go straight to hospital. She was quietly excited to return to the swimming pool, despite the new challenges.
Learning to crawl
The pool is still Sayer’s happy place; she has always loved racing. But when she jumped in the water after receiving clearance, she discovered she couldn’t swim. She couldn’t even float; her body tipped over due to the loss of muscle mass in the right side of her back.
“I had to teach her how to balance again,” says Sayer’s coach, Graeme Laing. “I got in the water with her; we had to start from scratch.”
Sayer’s left side, meanwhile, was already weakened as a result of the tuberous sclerosis complex. And, unlike most para-athletes, she lives with both a physical and an intellectual impairment. Qualifying for anything, let alone a world championship the following year, seemed out of the question.
But she was not going to allow any setback to define her or keep her away from the pool. Instead, her determination grew.
Laing was a coach at the 2016 Olympics and has been Sayer’s coach for three years. His late father, Duncan, coached Danyon Loader, New Zealand’s only swimmer to win solo Olympic gold. Graeme Laing also coached Loader on occasion when his father was on sick leave, and was New Zealand’s head coach at last year’s Oceania championships in Australia. “I don’t even know if I’d even be a swimmer without dad, certainly that’s what made me coach,” Laing says.
Just over two years ago, Laing clearly did not know he would be coaching quite a different swimmer in Sayer. In October 2023, she had returned from France with a top-eight placing at the Virtus Global Games, the largest international sporting event for intellectually impaired athletes, some of whom went on to compete at the 2024 Paralympics in Paris. Could Sayer reach Los Angeles 2028?
Road to Singapore
Amanda Sayer doesn’t see why her daughter can’t be a Paralympian; Rylee is tough, positive and resilient. Some of that resilience, Amanda says, stems from her daughter’s time in hospital.
“There were kids who weren’t getting through their treatment. Life is short. You’ve got to make the most of it and that’s where her positivity comes from.
“She has literally gone through the toughest thing in her life, and yet she’s tackled it with such amazing positivity and grace.”
Her daughter: “Just because you have had an amputation, it doesn’t mean you can’t do anything. You shouldn’t give up just because you’ve had something so horrific happen to you. There’s no point wasting your life and worrying because you’ve lost a limb. It might suck but you live with it.”
I’ll never forget the day I was told a big part of my right side was being removed because my cancer was too aggressive.
Sayer was determined to compete at the national championships in April, three months after her pool clearance, despite suffering from tiredness due to aggressive chemotherapy treatment.
“That’s something I had said was my goal that I wanted to do, and I got the all-clear from my oncologist. I was stoked,” she says. “We literally just finished chemo at the New Zealand champs.”
Chemo has taken a toll, says Amanda Sayer. “She has stage 2 kidney disease from chemo, she has anthracycline-induced heart damage, and her kidneys were damaged by the chemo drug methotrexate.”
Seven months after the nationals, at the November 2024 Waikato regional championships, Sayer really hit her stride. She had been reclassified into a para group that took her amputation into account.
Her new group meant she was more competitive against fellow swimmers in her category, and had more events she could qualify for.
Her doggedness resulted in qualification, just a year after her operation, for her first world championships, in two events.
In swim meets during the following months, she qualified for a further three, but has chosen to race in a total of four events in Singapore.
“Representing New Zealand is probably everything I’ve dreamed of since I was a little girl, so it’s pretty amazing I now get to go,” Sayer says.
Her rapid progress and determination have impressed Laing, too. “It’s a fantastic achievement how quickly she’s come back; she’s ahead of where I thought she would be,” he says. “It’s a credit she has carried on swimming. I believe she can get a medal at the Olympics if she carries on the way she is.”
Had Sayer not resumed swimming after her operation, life would have been quite different. She would not have been socialising with friends at training, let alone be going to Singapore for the world championships.
She adds that without an outside focus, her mental health would have deteriorated. “I think I would have probably gone down a dark hole.”
Away from the pool
Sayer’s challenges were not just in the pool, of course. She had to learn to write with her left hand. She couldn’t tie her shoes or hang out the washing singlehandedly. She can now tie her shoes with one hand and can write a little.
Sayer’s interests out of the pool include long walks with her dog, Dave. She reads fantasy books, is a Formula 1 fan and loves going to the beach and shopping with friends. Not long out of Starship, she applied to Make-A-Wish New Zealand, which grants wishes to children with critical illnesses. Her wish was for a shopping spree.
Sayer’s best friend, Millie, was flown up from Wellington to join her for the special day. “It was nice to have Millie there as part of my wish – she got something little, too; we got matching pyjamas. I’m pretty lucky to have a friend like Millie in my life.”
As well as shopping, Make-A-Wish arranged for a fashion photoshoot. Sayer could then share photos to help empower other young amputees.
“I wanted to show younger girls who are going through things, like maybe they’ve lost a limb or have lots of scarring, and I wanted to show them that you are beautiful just the way you are; you don’t need to change who you are just to fit into society. My wish made me feel confident within myself.
“I can now talk about my journey, and hopefully it helps others, and inspires other kids to maybe talk about their own journey.”