A mum from the Isle of Wight is urging other parents to look out for the tell-tale signs of eye cancer this World Retinoblastoma Awareness Week, after their five-year-old son Arlo was diagnosed with retinoblastoma, a rare eye cancer that typically affects children under the age of six.      Mum Megan spotted an unusual glow in her son Arlo’s eye in August 2023. Megan said, “I had noticed something and the next day my sister had him for the day and she called me and said that his eye was completely white while playing in his cousin’s room directly in the sunlight. I was pregnant at the tim ..read more

We often feature our wonderful CHECT mums in our stories, and we feel it’s important to recognise those amazing dads out there who go above and beyond to support their families as well. Father’s Day is fast approaching and we’re asking children (maybe with a bit of help) to nominate their dads for an honorary CHECT Champion Award. The award-winning dads will be featured on our website and social media, plus each dad will receive a special certificate. If you would like to nominate a hero dad, please email info@chect.org.uk and tell us a bit about your dad and why he deserves an award – with th ..read more

On 23 March, 14 CHECT families braved the rain for a meet-up at Discover Children’s Story Centre in East London. Unbelievably, at just the moment everyone was due to arrive, there was a full evacuation of Stratford Station! However, that wasn’t going to deter us, and after a few hasty bus and taxi reroutes, we were all there and ready to have fun. We were delighted to have so many CHECT Champion awards to make, and once we’d had a chance to celebrate everyone, a storyteller came to entertain us. Once the stories were over, there was time for mums and dads to chat while the children got down to ..read more

We are delighted to be able to announce our latest retinoblastoma research award to Professor Yellapantula for his project “Prognostic stratification and early detection of relapsed retinoblastoma using aqueous humour based cfDNA screening”. Cancers shed DNA fragments, called cell-free DNA (cfDNA), into bodily fluids, which helps us to detect genomic changes driving tumour growth. Retinoblastoma cfDNA can be found in the watery fluid from the eye called the aqueous humour (AH). This team will be examining AH collected during treatment, to see if they can: 1) detect relapse earlier than current ..read more

We were delighted to receive this heartwarming message from Ivy’s mum Ewelina, after Ivy lost her eye to retinoblastoma. Ewelina said, “My daughter got inspired by other kids showing off their special artificial eyes so she asked her ocular prosthetist in Eye Pavilion in Edinburgh to make her glitter blue eye . She just got it and embraced her individuality. She’s very happy with it and all thanks to you guys sharing stories of other kids with retinoblastoma. I’ll be forever grateful.” If you have queries relating to prosthetic eyes, you can contact our support team who will offer a ..read more

For World Retinoblastoma Week, we spoke to Michael about his journey from the childhood eye cancer, enucleation and beyond! Background History and Diagnosis My name is Ayokunle Michael Omotayo (Michael), and I was born on 1st October 1992 in Kings College Hospital, South East London. I was diagnosed with retinoblastoma in my left eye in1995 when I was 2 ½ years old. My mum noticed a shining light in my left eye and said I wasn’t eating well, frequently vomiting, was generally looking unwell and losing a lot of weight. She took me to the GP several times to and to several opticians who didn’t s ..read more

It’s World Retinoblastoma Awareness Week from 12th May – 18th May 2024 – keep an eye out on our blog for our next awareness story. There are a few different ways that you can help raise awareness and funds to support families affected by retinoblastoma during this important week. Whether you’re organising an event or simply sharing one of our social media posts, we are incredibly grateful to each and every one of you for your support – thank you. Spreading the word We’ll be posting via our Facebook, Instagram and Twitter channels throughout World Retinoblastoma Awareness Week. Please ..read more

CHECT Head of Support Petra Maxwell and Fundraising Manager Priyanka Kotecha recently attended one of our Beyond Rb meet-ups. Here, they discuss how the day went: Our Beyond Rb meet-up in February took place on a beautiful, sunny day at the Kelham Island Museum in Sheffield. We kicked off the day with a private tour of the museum, seeing how the steel trade had shaped Sheffield over the years, and learning some bizarre facts along the way! We even got to hold a hand-grenade, and a surprisingly heavy piece of shrapnel. We then had an opportunity to handle some of the more unusual artefacts from ..read more

We spoke to author Kay Lewis about her first book, Amazing Maisy. The *book is a reflection back to when Kay’s daughter Maisy was diagnosed with retinoblastoma, and what life is like now for Maisy. Can you tell us about what prompted you to write a book? The reason I wrote the book at first was mainly for Maisy to read so she could understand everything she went through. However, the more details I added to the book the more I realised that actually it would possibly help other families going through the same or similar journey. What process did you undertake to write the book? I have ne ..read more

Shaun discusses his late father Tony, who raised over £6000 for CHECT by making and selling hedgehogs and bird boxes. All of us at CHECT pass on our best wishes to Tony’s family, as we fondly remember Tony for his kind generosity.  Cancer is tough but the people who battle it are even tougher and our family has had its fair share of battles with cancer. Our son Karl was diagnosed with bilateral retinoblastoma in1999, age 3 months and had his left eye enucleated and went through cryotherapy and laser treatment to his right eye at Birmingham’s Children’s Hospital. 25 years later his grandfa ..read more