Christopher Payne, 13, and his family have been involved with CHECT since his diagnosis 10 years ago. Here, Christopher talks about the support he has received and how he is giving back to the organisation to help raise awareness of retinoblastoma…
When I was diagnosed with retinoblastoma aged three and a half, there was no one or organisation out there to support me or my family, except CHECT. Being a very rare disease, CHECT is the only UK charity specialising in supporting families affected by Rb, raising awareness of the disease and researching cures for retinoblastoma.
Every step of the way, CHECT has supported me throughout my tumultuous journey with cancer. They have given my family and I the chance to meet others affected by retinoblastoma through their day trips and weekends away. They have offered guidance and support through the toughest period of my life and have provided nursing services to help both myself and my teachers to provide effective care, support and teaching during the school hours.
The charity has strived to improve my daily life, by providing me, and other children affected by Rb, with free sports goggles, enabling me with the chance to play sport, pivotal in living a happy and healthy life. Also, they have granted me an ‘Eye kit’, allowing me to care for my false eye at school.
The trips that CHECT arranges for children and young people affected by Rb are consistently the highlight of my year! Last month, I was lucky enough to go on a VIP visit of ‘Global’s’ studios in Leicester Square with a group of teenagers. Global is the media and entertainment group, the parent company of some of the UK’s most popular radio stations, including Heart, Capital and LBC.
Firstly, we were shown around Capital’s studios and office space, getting to meet both the presenter Rob Howard and the producer of the show. Then we stopped to have our photos taken with the famed ‘Instagram wall’ backdrop. After this we were shown both Capital Xtra’s and Radio X’s studios. After a talk explaining both stations, we moved downstairs to the floor housing Classic’s, Smooth’s and Gold’s studios. We were shown into Classic’s studios and got the chance to speak to Bill Turbull and the producer courtesy of seven minutes of Beethoven. Bill Turnbull was Lesley’s personal favourite.
Next we moved next door to Smooth where we met Margherita Taylor and got a special airing on the Smooth show, with all of our names mentioned. After that we moved down once again to Heart’s studios and office space, Global’s biggest brand. There we met Matt Wilkinson and were shown their newly refurbished studios. After our exciting morning, we moved upstairs to Global’s terrace and ate a fantastic lunch of pizza whilst admiring the incredible view of the London skyline.
After everyone had finished eating the wonderful pizza and not to mention Theo’s Mum’s delicious Greek pastries we moved to a boardroom to discuss, CHECT’s new initiative, the Teen Focus Council. It was a wonderful day out and an incredible experience and a big thanks should go to Global but especially to Patrick and Lesley, who accompanied us, and CHECT for arranging such a good day out.
It is days like these which make CHECT such an amazing charity, supporting and helping those affected by retinoblastoma. To carry on their incredible work, CHECT need help and support. Many children helped by CHECT will choose to do a small something back to the charity who have shaped our lives into happy, healthy and fulfilling ones, full of friends, support and love. A life many of us would not be living if it weren’t for CHECT’s incredible work.
Two years ago, my brother and I, amongst many young people affected by Rb, opened a nationwide sunglasses raffle at Vision Express stores. Vision Express is a partner of CHECT, raising vital sums of money so that CHECT can keep doing their incredible work. This sunglasses raffle was a fundraiser for CHECT and to open the raffle to members of the public in Banstead, my brother and I were invited to have some photos taken with some weird and wacky sunglasses (in my case anyway, I’m pretty sure my brother posed with some ‘Ray Bans’!) The photos taken were then put on the local paper’s website and print – out. Events like these are so important as retinoblastoma is such a rare disease and its symptoms are so little known, and yet it could affect any young child!
Being a nationwide company and a nationwide raffle, it is hoped that more people than ever now know about retinoblastoma and the danger it beholds. As well as the raffle, many young people affected by Rb have opened new Vision Express stores, all with the hope that more and more of the public can become aware of retinoblastoma, its symptoms and how it can be combated.