Less than one in three parents have ever had their child’s eyes checked, new figures released by the Childhood Eye Cancer Trust have revealed.

A survey of more than 1,000 mums and dads with children aged from birth to six found that just 28% had taken them to an optician, GP or other health professional for an eye check. Half of parents didn’t know that children could get eye cancer and a further 36% admitted that although they were aware, they didn’t know much about it.

CHECT released the results of the poll, by MMR Research Worldwide, to mark World Retinoblastoma Awareness Week, from 8-15 May 2016, and to launch its In the Dark campaign to shine a spotlight on eye cancer.

CHECT is calling for parents to be aware of their child’s eye health and to take them to see a health professional if they notice any changes or have any concerns. Read about the symptoms of retinoblastoma.

Patrick Tonks, Chief Executive of CHECT, said: “For too long retinoblastoma has been shrouded in darkness – children are left in the dark because some or all of their vision has been stolen and parents and healthcare professionals are in the dark because of a lack of awareness. Our survey found that 86% of parents had either never heard of retinoblastoma or didn’t know much about it, but the signs and symptoms of this devastating cancer are subtle so it’s vital that mums and dads are aware otherwise they could easily be missed.

“Parents usually know when their little one is unwell but with retinoblastoma children often seem perfectly happy and healthy so it’s much harder to spot. We want all parents to be ‘eye aware’ and to take their child to see a health professional if they have any concerns at all.”

Patrick adds: “Retinoblastoma is rare and symptoms like a squint or white eye are often nothing to worry about but they should always be checked to rule out anything serious.”

‘My daughter lost her eye to cancer’

Eliza Thomas was three years old when she was diagnosed with retinoblastoma in October last year and she had her left eye removed a week later to save her life.

Her mum April Thomas, 27, has since learned that Eliza had been going blind in one eye for months without anyone knowing. April, from Westminster, London, said: “Retinoblastoma is a silent cancer. Eliza was losing her sight and we had no idea at all because she just adapted to it. There was no obvious sign that anything was wrong with her.”

April took Eliza to the optician because she had a squint that seemed to be getting worse. But she admits that when she turned up to her appointment at Vision Express in Oxford Street she didn’t expect there to be anything seriously wrong.

She said: “We didn’t really think anything of it and assumed the worst thing that would happen was that she’d be given corrective glasses or a patch to wear over her eye. But when the optician examined her she saw what looked like a tumour growing in her eye and told us to take her to hospital immediately. As I rushed Eliza to A&E that evening all I could think about was that my little girl might have cancer.”

Over the next five days the worried family visited three different hospitals before they finally received the diagnosis they feared most – Eliza had eye cancer. April says: “Right from the start the doctors told us that it was too late to try other treatments like chemo or laser therapy and that the only way to save Eliza was to remove her eye. I was absolutely devastated – nobody thinks it will ever happen to their child.

“We only had a week to take in the news before Eliza had her surgery. On the day it was very emotional for all of us. I went with Eliza into theatre and stayed with her until they put her to sleep. Then as soon as I left I just cried my eyes out because I knew it was the last time I would see her with both her eyes.

“I was always being told that Eliza had the most beautiful eyes and so for the cancer to have affected that part of her was absolutely devastating. But at the same time I also felt relief and hope that this operation would get rid of the cancer and save Eliza.”

The operation went well and tests showed that the cancer hadn’t spread and Eliza didn’t need any further treatment, although she will have to have regular check ups. April says: “Eliza was sitting up and painting pictures within a few hours of waking – she was amazing. She cried when they took off the bandage but then she just got on with it. She had been blind in one eye for so long anyway that she had already adapted.”

A few weeks later Eliza was fitted with a temporary artificial eye and she is getting used to wearing it before having a more permanent one made for her. Despite everything she’s been through she is a happy little girl who loves going to nursery and playing with her big brother Dominic, six, and her cousins.

April says: “Eliza adores horses so we took her horse riding for her fourth birthday, which she loved. She also enjoys drawing and writing down numbers. On her first day at nursery I saw a few of the children going up to her and looking at her eye – but then a minute later they had lost interest and wandered off again and she settled in really well.”

April adds: “I want all parents to be aware that children can get cancer in their eyes. If you notice anything unusual about your child’s eyes, don’t just assume it’s nothing – get it checked out to rule out anything serious and don’t give up if you think something is wrong.”

Watch Eliza and April’s story