Interview 

Teen Focus Council Member Meets MPs

We spoke to Christopher Payne who attended the CHECT parliamentary drop-in event on Wednesday 15th May at Westminster. This was part of World Retinoblastoma Awareness Week 2019, to engage MPs in raising awareness of Rb in their constituencies. Can you tell me a bit about your experiences with Rb? When I was three and a half I was diagnosed with Retinoblastoma in my left eye. My eye was enucleated and replaced with an artificial one at the Royal London Hospital. I was then subject to rounds of Chemotherapy at Great Ormond…

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Interview 

Q&A With Lesley Geen

Beth Holman interviews Lesley Geen, Support and Information Worker at the Childhood Eye Cancer Trust. Q1. What does your role include? One of the main things that I do is support. I work closely with babies during treatment as well as children, teenagers and adults affected by retinoblastoma but also their families and friends, making sure they have the support the they need. I visit out patients clinics at the Royal London Hospital to see those that come for check ups. I am at the hospital every Wednesday too, where…

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Photo of Harry Harrison News 

Teen Focus Council

CHECT is planning to create a Teen Focus Council, in order to better support teenagers affected by retinoblastoma, and to give them a voice within the charity. CHECT member Kelsey Trevett spoke to Harry Harrison to find out more about the idea… Q: Can you tell me what the Teen Focus Council will be? A: The Teen Focus Council is an opportunity for teenagers to have a voice within CHECT. The idea is to enable teenagers to have a voice in planning events and activities aimed at our age group,…

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Photo of Kelsey celebrating his exam results in the CHECT office with Hayley and Diane Education News 

GCSE results day

On Thursday, Kelsey Trevett joined thousands of children around the country in getting their GCSE results. Here he explains the range of emotions that have been running through his mind since those dreaded exam days… Every teenager is different, but I think there is one thing that pretty much all of us can agree on: exams are a nightmare. Whether it be GCSE exams, A levels or other educational assessments, exams are one of the most stressful, and yet repetitive, aspects of a teenager’s life. I recently collected my first…

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Photo of a man playing Goalball My story News Reviews 

‘I can’t imagine my life without Goalball’

Sixteen-year-old Kelsey Trevett gives the lowdown on Goalball and how it has transformed his life…  As a blind or visually impaired teenager, it can be difficult to find a sport-related activity that is fully accessible: the mainstream games of football, cricket and rugby were, after all, hardly designed with the blind in mind. Goalball is the first, and only, sport designed with the intention of being played by blind and visually impaired athletes, but that’s not to say it can’t also be played by sighted people too. Today, it is…

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Photo of a boy having his eyes tested by an optometrist Interview News 

Spreading the retinoblastoma word

Petra Maxwell is CHECT’s Information and Research Manager; she raises awareness of retinoblastoma among healthcare professionals. She sat down with Kelsey Trevett to answer some questions as to what her job entails, and about working at CHECT… Q: Firstly, could you briefly summarise your role at CHECT, and what you do? A: The main part of my role is to raise awareness among healthcare professionals, including health visitors, GPs and opticians, of the symptoms and tests involving retinoblastoma. I also highlight the importance of urgent referrals for children with symptoms…

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Interview News 

‘Lacey has improved my life in so many ways’

When Kelsey Trevett was 16 weeks old, he was diagnosed with retinoblastoma in his left eye and it was removed. Unfortunately, aged five years old Kelsey was diagnosed again, this time in his right eye. His remaining eye was removed when he was six. Now 16, Kelsey has just finished his GCSEs and over the past year has been adjusting to life with his newest companion, guide dog Lacey. Here Christopher Payne, 13, talks to him about his relationship with Lacey, how she has benefitted him and some of the…

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Photo of Kelsey at the Vision Express store opening My story News 

My involvement with CHECT

From being a Vision Express ambassador to attending one of our residential weekends, Kelsey Trevett, 16, talks about his involvement with CHECT over the years… Having been affected by retinoblastoma throughout my childhood, I have had a strong connection with CHECT for the majority of the last 16 years. Their support throughout my treatment and multiple hospital visits was invaluable to my family and me, and as I’ve got older, the opportunities offered to me by CHECT have been a fantastic way to share experiences, stories and (most importantly) laughs…

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Photo of Christopher Payne and other teenagers at Global radio studios My story News 

CHECT and teenagers – taking the journey together

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…

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