‘We saw an odd glow while bathing our baby, now she’s fighting for her life’

When a couple saw a white glow in their nine-month-old Nora’s eye, they never expected cancer. But now aged two, the toddler is still undergoing treatment for the rare disease

A couple have spoken of their heartbreak after a simple white glow spotted in their baby daughter’s eye turned out to be a sign of a rare form of childhood cancer.

Jess Whistler, 28, and her partner Callum Udy, 29, first noticed something unusual about their daughter Nora’s left eye during bath time in February 2024. “She was about nine months old at the time,” Jess tells The Mirror.

“Callum was bathing her, and in the light we could see this perfectly round white glow in her eye. It was only in the left eye we could see it, but once we noticed it, we kept seeing it over the following days.” At first, the couple, from Portsmouth, didn’t know what to make of it – until they decided to check the NHS website.

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“That’s when we found information about retinoblastoma,” Jess explains. “It’s a rare eye cancer in children, and the site said to contact your GP straight away. We called that day.”

The GP immediately referred Nora to the local hospital’s eye clinic, which in turn sent her to the Royal London Hospital in Whitechapel, home to one of the UK’s leading retinoblastoma units.

“The process moved incredibly quickly,” Jess said. “Within two weeks of first noticing the glow, we had seen specialists. Our GP and local hospital were fantastic – even though the eye department couldn’t give us a diagnosis, they knew it was serious.”

Tests confirmed that Nora, now two-years-old, had bilateral retinoblastoma, meaning cancerous tumours were present in both eyes. While the right eye showed no visible white reflection, a smaller tumour was still found.

“It’s not a well-known illness,” Jess explains. “You usually find out when the child is still a baby. Older children can get it, but it’s very rare.”

Bilateral retinoblastoma is typically found in children aged five and under, with treatment aimed at preserving vision and the eye where possible, though it can ultimately lead to vision loss.

The family were told that treatment options vary greatly depending on the tumour’s size, location, and growth.

“There are five or six possible treatment paths a child could go down,” Jess said. “We have full confidence in the specialists – they’ve been doing this for years and can assess very quickly what’s needed.”

The diagnosis forced the family to put their lives on hold. Jess had been due to return to work at a local law firm, and Nora was set to start nursery the following week.

“We had to cancel everything,” Jess says. “I stayed off work while she began treatment. Callum is self-employed, so he has no choice but to work – but he’s never missed an appointment. We’ve been lucky to have strong support from family and friends.”

Since then, Nora’s treatment has been ongoing. “The retina stops growing at around three and a half years old,” Jess explains.

“Doctors hope that things will slow down after that, but for now the treatments haven’t stopped. In 2024, we had multiple hospital stays. This year there have been fewer, but she’s now back on a treatment that requires overnight stays in London.”

Those trips to the capital bring extra costs. “When we’re in London, prices are much higher for everything,” Jess said. “The hospital does its best to provide accommodation, but sometimes it’s fully booked. Then we have to pay for hotels, train fares, and food. It adds up quickly.”

To help the family manage these expenses, Jess’s best friend set up a GoFundMe campaign called Nora’s Journey. The fundraiser covers travel, accommodation, and essential living costs when the couple are away from home for treatment.

“It’s been a lifeline,” Jess adds. “It means we can focus on Nora and not worry so much about bills while we’re not able to work.”

Despite the challenges, Nora, now two and a half, has shown remarkable resilience.

“She’s amazing,” Jess says proudly. “You’d never know what she’s been through. She takes every treatment like a champ. The hospital staff are incredible too – it feels like walking into your family’s front room when we arrive. And Nora is so sociable and hilarious. She’s just amazing.”

The couple hope that by sharing their story, they can help other parents spot early signs of the condition. “If you notice something unusual with your child’s eyes, even something small like a white reflection, get it checked immediately,” Jess adds.

You can support Nora’s Journey here.