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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 with other teenagers with retinoblastoma, and to develop friendships along the way.

Therefore, when I was approached by CHECT to be a Vision Express ambassador for them, I saw it as an opportunity to not only raise awareness of my eye condition, but to promote and celebrate the things CHECT have offered me over the years. It also served as a way to thank Vision Express, whose employees and customers have raised a total of £500,000 for CHECT.

As a child, my primary involvement with CHECT has been within the hospital, which is not always the most relaxed of environments, and can cause high levels of stress and anxiety at times. Involving myself with CHECT outside of the hospital felt, at first, quite strange; the association between CHECT and the doctors who treated me was fairly strong, which made things feel a little odd.

However, I can safely say without a shadow of a doubt that CHECT have been brilliant in offering me opportunities and experiences which I wouldn’t have had otherwise, and simultaneously allowing me to connect with other young people in similar situations to myself. I am extremely glad that I increased my involvement with CHECT, especially as a teenager, as it has allowed me to take advantage of the opportunities provided, as well as giving me a safe and comfortable environment in which to discuss and share experiences relating to retinoblastoma with other young people who can understand and relate to me.

CHECT Teen Weekend

In 2015, I attended CHECT’s first teenage residential weekend aimed solely at teenagers, without our parents. I can’t deny that, despite my previous involvement with CHECT, I was nervous; the idea of spending the weekend with seven other young people — none of whom I knew — and staff who I had not met before was, in all honesty, terrifying. Even stepping over the threshold of the venue in Essex, I wondered whether I was really going to enjoy this weekend — luckily, I had nothing to worry about.

The weekend consisted of many entertaining (and completely hilarious) activities, including archery and blindfolded team-building exercises. Whilst these were really enjoyable and great to participate in, the best part of the weekend was definitely meeting all the other young people: whether we were chatting in the evenings, laughing over lunch or singing around a campfire (Taylor Swift, anyone?), we got on incredibly well, and soon developed strong friendships. I cannot express just how relaxed and friendly an environment it became, and how lovely everyone was.

Speaking about the usual stuff — music, films, school — with unfamiliar faces can be difficult at the best of times; speaking openly about something as personal as your visual impairment can be extremely nerve-wracking. This CHECT weekend, however, allowed us all to speak openly, honestly and comfortably about our visual impairments without feeling self-conscious or misunderstood; it’s an opportunity which is both far too rare, and yet indescribably valuable to young people such as myself.

Despite my initial apprehension, the weekend is one of my personal highlights when I think about my involvement with CHECT over the years. Not only was the weekend itself a wonderful experience, full of so many long-lasting memories, but it also enabled me to connect and develop friendships with others in a similar situation to myself, which is, in my opinion, vital to a young person affected by retinoblastoma.

CHECT have continued to support teenagers affected by retinoblastoma: in April 2017, a day was organised for teenagers — including some of those from the 2015 weekend — to meet in the Stratford Westfield shopping centre, for a day of bowling, food and discussion regarding teenage involvement in CHECT in the future.

These days are great for connecting with other young people like me, and to meet other teenagers in similar situations to my own. It also offers the opportunity for young people to share experiences, stories and challenges, which I personally find very useful; it’s surprising how many experiences in common you may have with other teenagers affected by retinoblastoma! Whilst no two people’s stories, experiences or views are exactly the same, it is amazing how positive people are, and how encouraging those attitudes can be.

Useful links:

Eight go mad in Essex – Teenage Weekend.
CHECT teens go Global
Teenage weekend 2016

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