Baby Ava’s eye changed when she caught a bug

AVA Grace had been a happy and healthy toddler, but everything changed when she was 14-months-old.

After catching hand, foot and mouth disease, her parents Vicki Cooper-Bird and Ian Bird noticed changes in her eyes – it was the first sign she had cancer, and her diagnosis “completely blindsided” them.

Over a matter of hours, Ava’s iris had darkened from a light blue to a dark blue and her pupil stopped dilating properly, prompting a trip to the GP.

Unable to see the back of Ava’s eye, the GP referred the family to the paediatric assessment unit, who admitted her for three days for monitoring and tests.

An ultrasound scan found that the pressure in Ava’s eye was more than double what it should have been, and the family’s world came crashing down when the senior paediatrician for ophthalmology told them he suspected retinoblastoma – a rare eye cancer.

Ava had full retinal detachment, meaning the light-sensitive retinal tissue had separated entirely from the back of the eyeball, and was blind in the affected eye, something Vicki and Ian hadn’t been aware of until that point.

She was transferred to a specialist clinic in Birmingham for an eye exam under general anaesthetic, where the parents’ worst fears were confirmed – she had a 22mm grade E tumour, the highest and most serious grade, and she was diagnosed with retinoblastoma on November 2 2023.

Vicki, 37, who lives in Port Talbot, South Wales, said: “Ava’s diagnosis, it was completely blindsiding.

“We had no idea, nothing

“It was really aggressive, and there wasn’t anything they could do to save the eye.

“We just sat in the car, and we just cried. At that particular time, we didn’t know anything about retinoblastoma. We didn’t know how long we had left with her…we just felt raw and unsure of what the future held.”

Ian, 40, added: “The C word, when you hear that for yourself, is almost devastating, but when you hear it for your one year old, that’s really another level, which no one would ever even want to even consider…

“It was very numbing, but we just had to focus on the next step.”

Retinoblastoma affects between 40 and 50 people each year, usually children under five.

If left untreated, it can be deadly.

Thankfully, Ava’s cancer hadn’t spread along the optic nerve, so there was no need for chemotherapy before surgery to remove her eye.

On November 14, just three days after Vicki and Ian’s wedding day, Ava was taken into surgery.

Ava faced complications afterwards, including the trial-and-error process of finding a prosthetic eye that suited her.

She struggled to adjust, often pulling out the prosthetic, and the family had to travel back to hospital two to three times per week to get it reinserted.

In the first year alone, Ava tried six different prosthetic eyes.

She’s also dealt with infections, healing struggles, and more physical difficulties, and is also contending with insomnia and psychological trauma from her experience.

Ava hasn’t slept through the night since September 2024, Vicki said, often waking between four and six times per night – but she is now attending bi-weekly play therapy sessions and has been prescribed melatonin to help her sleep.

Vicki and Ian also have two other children – a son aged 14, and a daughter aged 12 – who have faced a lot of disruption to family life over the last two years.

Ava, who’s now three, attends a specialist clinic at Waterfall House at the Birmingham Women’s and Children’s Hospital – one of only two sites in the UK which offer treatment for retinoblastoma – meaning Vicki and Ian must travel 200 miles each way for her appointments, often needing to spend the night in Birmingham, too.

She’s had 64 appointments in the past two years.

‘We just want to move on with our lives’

Speaking about the impact on their other children, Ian said: “They fully understand that Ava is taking the majority of the attention, not the love, but certainly the attention.

“It is difficult for them. They experience things and witness things that shouldn’t really be normal for a child, but we just try to get through it, and we just try to spread as much positive news as we can with them and try to share positive experiences.”

Thankfully, Ava is now cancer free – but she still faces a “really big medical journey”.

Ian continued: “We just want to just move on with our lives as a family, and not look at when the next hospital appointment is, literally in the coming week.

“I know she will have as close to a normal life as she can when she’s older, but we’re not there yet, unfortunately.”

For children like Ava, the smallest comforts during scary and intense hospital appointments can make the biggest difference.

When she had surgery to remove her eye, a nurse gifted her a cuddly penguin called Pip, who had a removable eye – just like Ava.

Now, Ian and Vicki are supporters of Children with Cancer UK’s Christmas Appeal, which is helping children who are dealing with cancer with a cuddly friend, Corry the Bear.

Ian said: “[Corry] represents comfort, really.

“It is a physical comfort, just something to be with Ava, and she can associate it with a bit of normality as well. Because it’s at home, and it’s something she can take with her to hospital too.”

As for Ava, there’s a long road ahead – but she and her family look forward to a day when life is closer to normal.

This Christmas, Vicki urges parents to watch out for the signs of retinoblastoma – signs which can be most prominently spotted through flash photography, which many parents will be using to capture festive memories of their families.

For example, the main symptom is a white pupil or glow, which can be seen in photos where the other eye shows a red reflection.

Other symptoms include a lazy eye, a squint, loss of vision and changes in the colour of the iris.

To support Children with Cancer UK’s campaign and purchase a teddy that helps children like Ava, Corry the Bear is available to purchase at childrenwithcancershop.org.uk/en/products/gifts.