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Selfless teen Rylee is doing her part to make others feel more positive

After having her arm and shoulder amputated, the Te Aroha teen is sharing a message of hope
An image from Rylee Sayer's make-a-Wish photoshootPictures: Chris Turner.

When Rylee Sayer was told her aggressive cancer meant she had to have her arm and shoulder amputated, the inquisitive teen googled the operation and what she found terrified her.

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So when she was asked by Make-a-Wish what she most wanted, Rylee chose a shopping spree and a photoshoot, to show others that you can survive – and be beautiful!

Rylee was born with tuberous sclerosis complex. The rare genetic condition causes growths in the body’s organs, and Rylee, 15, has them in her brain, heart, kidneys and skin, which require ongoing medical treatment and screening.

In October 2023, following months of arm pain, Rylee was diagnosed with an aggressive bone cancer – osteosarcoma – in her shoulder. Within a month she had to have her right arm, scapula and clavicle removed to save her life.

The talented swimmer wanted to know how the amputation would affect her in the pool and was shocked by what she found.

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“If you google ‘right full quarter amputation’, it’s the most terrifying thing you’ll see,” says Rylee. “They look like they’re out of a horror movie with really horrendous prosthetics. So I chose a shopping spree and a photoshoot. I want to be a role model for other people with disabilities. What people see now makes it feel more scary than it is. It needs to be a little bit more positive.”

Rylee’s mum Amanda is proud of her daughter’s choice and says that selfless trait has always been there.

“She didn’t shy away from what she was going through,” explains Amanda. “Rylee found that even though she’d had this really horrible thing happen, she could use it to give others hope and normalise it.

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“She’s very driven and determined. Her whole mantra was, ‘We can’t change this, so there’s no point looking in the past.’”

With parents Paul and Amanda.

While Rylee was undergoing chemo, she spent weeks in either Starship Hospital or at Ronald McDonald House. Doctors allowed her home to Te Aroha, in the Waikato, for five days before surgery. During that time, she started planning her wish for when she was well again.

“Make-a-Wish came to us in that really awful time. It gave us something to talk about that wasn’t about pain, medication and chemo,” recalls Amanda. “It was then that Rylee wanted to show people you can still be amazing and beautiful having lost part of your body.”

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As Rylee recuperated – including getting back into the pool only two months after surgery – the wish fairies started working on the plan that culminated in Rylee, her mum and dad Paul having a trip of a lifetime to Auckland.

A day of pampering and shopping was just the tonic for the gorgeous teen.

It also included Make-a-Wish arranging for best friend Millie to fly from Wellington to help share in the celebrations.

Amanda says Millie was the one person Rylee would speak to for hours on the phone, “stuff that Mum couldn’t talk to her about”.

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She explains, “People don’t know how to react when you have cancer and so some people just disappeared. So Rylee chose Millie to be her Make-a-Wish buddy and they caught up on the first day.”

Rylee excitedly tells us, “We got to go to the premiere of the movie Wicked! We even walked the red carpet and we had our own cinema, which was really, really cool.”

The following day, Rylee had her own personal stylist to accompany her shopping. They made her feel like a princess, donning several outfits for the photoshoot. The Diamond Shop also supplied diamonds for her to wear because the owner’s friend had been a recipient of Make-a-Wish and raved about the life-long memory.

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“We’re all overwhelmed by the wish – that complete strangers would be so generous is heart-warming,” shares Amanda.

Having just qualified as a swimmer for the World Para Swimming Championships in September, Rylee’s back in the pool training in freestyle and butterfly. She trains six days a week when post-treatment fatigue allows.

Rylee’s focusing on a Paralympic medal.

“My coach and I have made a plan that the Los Angeles Paralympics 2028 will be for experience and at Brisbane 2032, we’ll be medalling,” she grins.

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And Amanda thinks her courageous daughter has what it takes to achieve all her dreams.

“Rylee’s tenacity and strength, and how she approached this… She’s definitely not letting it stop her reach her goals,” she enthuses.

Receiving no government funding, Make-a-Wish relies entirely on donations. It fulfilled 170 wishes last year and more than 300 young people are waiting for their dreams to become realities. To donate, visit makeawish.org.nz.

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