A young eye cancer survivor from Putney is inviting his peers to join him in raising awareness of the importance of children’s eye health this Retinoblastoma (Rb) Awareness Week  (8-14 May 2017) as it is revealed[1] less than one in three parents have ever had their child’s eyes checked.

Vinnie Chandler-Shaw, was just eight months old when he was diagnosed with retinoblastoma, a rare form of eye cancer, in both eyes. Sadly, his left eye couldn’t be saved, despite six months of treatment, and the only option was for him to have life-saving surgery by removing the eye.

 “I was the first person to notice something was wrong and as a mother I just knew it wasn’t right,” said Claire Chandler, Vinnie’s mum. “It’s hard to tell with little ones as their eyes are still developing but I noticed his left eye kept wandering off, almost like a squint or a lazy eye. I thought he might need glasses but I wasn’t sure whether an optician would do an eye test until he was three or four.

Claire took Vinnie to their local GP and within two weeks, he was diagnosed with retinoblastoma. “The biggest shock of all was when the doctor said he had it in both eyes, not just the left,” Claire added. “He had tumours in his right eye and his sight was completely gone in his left. I’m just glad I did something about it before it was too late and didn’t wait for an eye test when he was older.”

Within two weeks, Vinnie had started a six-month course of chemotherapy, which was successful at treating the tumours in his right eye. Although the retina reattached in his left eye, Vinnie underwent cryotherapy treatment as the tumour was aggressive. Unfortunately, this didn’t work and the only option was to remove his left eye to save his life.

Although doctors were confident the cancer was contained in the removed eye, test results revealed it wasn’t and Vinnie had to undergo another four months of intensive inpatient chemotherapy. Claire added: “That was the worst part. Just when we thought it was all over and we could move on with our lives, he had to have further treatment – it was hideous.”

Vinnie, who has a twin sister, Georgia, and an older sister, Delilah, aged 11, now wears an artificial left eye and has regular check-ups every three to four months to ensure his right eye is stable. “Vinnie’s eye colour is lovely – a cross between blue, green and yellow – so he’s had quite a few artificial eyes made and painted for him, to fit in with his mood and eye colour. He’s good as gold with them.

“It’s sad because this is all he’s known. He was so young when he was diagnosed so we’re not sure how much it affected him. Now, he sometimes withdraws himself from situations and we don’t know whether that’s because he’s conscious of how his eye looks, or if he’s just shy. He’s still developing his own personality and he’s such a clever little thing. He’s happy and bright and he’s just sussing it all out for himself.”

As retinoblastoma can be genetic, Claire, Vinnie’s dad, Alan and his twin sister, Georgia, were all tested for the condition. Thankfully none of them have it. Claire added: “Delilah hurt her eye once and Vinnie said she could have one of his. He doesn’t fully understand what’s happened but he’s aware now that his sisters don’t have to take an eye out and clean it, nor do his parents – he knows he’s different. He’s still learning and it will take him a while, but he seems happy – he even talks about his artificial eye as his ‘good eye’.”

As part of Retinoblastoma Awareness Week, Vinnie and his family are being invited to Vision Express’ Westfield shopping centre store to help host an under-16’s drop-in clinic, on Monday 8 May. The event aims to raise awareness of the condition and highlight the importance of regular eye tests for children, while offering free comprehensive 30-minute sight checks. Although under 16’s are already entitled to free eye tests on the NHS, Vision Express hopes the drop-in will encourage parents and their offspring to pop by after school between 3pm and 7pm.

Vision Express Westfield store manager Camille Mclean, said: “We’re really looking forward to welcoming Vinnie and his family to the store, to share their personal experience of eye cancer. It’s a great morale boost for the team to do something meaningful for such a great cause, and is a great way for Vision Express to let people know about the importance of regular eye tests for children.”

Claire thinks the fact so many parents have never heard of Rb makes raising awareness even more important. She added: “When we were first on the road to getting a diagnosis for Vinnie, I was aware of retinoblastoma and if I hadn’t been, the diagnosis would have been a million times worse. Knowing it could be a possibility made it a little bit easier to deal with so I think it’s important for parents to be aware of it.”

One of the symptoms of retinoblastoma is a white flash in the eye in photographs and Claire was surprised this wasn’t found in Vinnie’s case. “I looked back over the millions of photos I had of the children and frantically looked for it but there was nothing there,” she said. “We even had professional photos taken of Vinnie when he was five months old and after the diagnosis, I phoned the photographer to ask whether he’d edited the photos. I also made him aware of what to look for as so many photographers would automatically just edit it out if they didn’t know what they were seeing.”

The Vision Express Westfield store in White City was selected as one of five locations on its UK-wide tour for Retinoblastoma Awareness Week, after the district was identified as having an increased percentage of children at a higher risk of vision impairment due to economically deprived backgrounds[2]. Statistics[3] show the level of child poverty in the area, located in the London Borough of Hammersmith and Fulham, is higher than the national average (29%) with 41% of children under 16 living without basic necessities.

Joining forces with Vision Express for the week is the Childhood Eye Cancer Trust (CHECT). Patrick Tonks, CEO at CHECT, will be helping educate visitors to the Westfield store on retinoblastoma, and the signs and symptoms to be aware of.

He said: “Vision Express continues to be a fantastic supporter of the Childhood Eye Cancer Trust, and we are delighted to attend their events during Retinoblastoma Awareness Week. Having Vinnie here today highlights the importance of parents recognising the signs and symptoms of retinoblastoma, and getting their child’s eyes checked by a healthcare professional if they have any concerns. We are so grateful to Vision Express for helping CHECT to raise awareness of Rb with even more parents.”

Vision Express was the first optician in the UK to roll out a protocol to ensure a quick and effective referral if Rb is suspected. The national optical retailer has enjoyed an award-winning partnership with CHECT since 2010, using initiatives to raise awareness of Rb and drive donations for the charity, so they can help more families affected.

Around 50 to 60 cases of Rb are diagnosed each year and while 98% of those diagnosed will survive, they may face having an eye removed or have lasting vision impairment issues.
Children’s sight can be tested at any age, and it’s recommended that they see an optometrist before they start school and begin learning to read. With eyes being fully developed by the time youngsters are eight years old, any sight defects that have gone undetected by that time are largely irreversible. All children under the age of 16, or under 19 and in full-time education, are entitled to a free eye test and a contribution towards glasses or lenses on the NHS.

Vision Express offers an eye test to best practice guidelines of the College of Optometrists (COO), with each Vision Express optometrist being a qualified eye health professional. To book an eye test at the Westfield store call 020 8743 7744, visit Unit 1157, Lower Mall, Westfield Centre, Ariel Way, White City W12 7GD or make an online enquiry at: www.visionexpress.com/book-eye-test/

[1] 1,030 parents took part in the online survey, conducted by MMR Research Worldwide in May 2017.  All parents had at least one child aged between 0-6 years.
[2] RNIB State of the Nation report. 2016
[3] Child poverty map of the UK, Laura Valadez and Donald Hirsch, Centre for Research in Social Policy, Loughborough University, 2016

Article supplied by Vicky Sanderson