Thank you so much for your extremely generous grant of £875 awarded to the Childhood Eye Cancer Trust (CHECT) in August 2017 to fund the specialist multi-sports sessions at our 30th Anniversary Family Support Weekend in September 2017.
CHECT’s 30th Anniversary Family Support Weekend took place from 15th-17th September 2017 at Newlands Park in Buckinghamshire. The event was attended by over 250 people affected by retinoblastoma (Rb) and was an enormous success. We were delighted to have VICTA’s presence at the Weekend and do hope that you enjoyed meeting some of our families. We are very pleased to report that VICTA’s grant was spent in full on the costs of the multi-sport sessions, as stipulated in our application.
Due to Buckinghamshire’s reasonably central location, families and young adults with Rb were able to attend from all over the UK. This was our intention when choosing the setting. Nearly all of our families arrived on the Friday evening, with a few local families coming on the Saturday morning. Everyone who took part in the multi-sports activities had a super time and many adults and children and children told us afterwards how much they’d enjoyed the sessions.
The overall emphasis of the Weekend was to provide a fully accessible, fun and supportive weekend providing friendship, support and understanding of Rb and the subsequent permanent visual impairment or blindness. Our events programme throughout the Weekend provided dedicated sessions for children with Rb; their siblings; teenagers; young adults; and parents, enabling families to have fun together and also benefit from the shared understanding and support of their own peer group.
Feedback about the Weekend from our families was overwhelmingly positive, with 72% of our families stating that the event had exceeded their expectations and the remaining 28% stating that it had met their expectations. The wide range of activities on offer was also especially well received, with 79% stating that it had exceeded expectations. In response to the question “What did you enjoy most about the event”, our families told us:
- “Meeting others and hearing their stories”
- “Meeting friends old and new and chatting to them”
- “I loved the visually impaired sports”
- “Contact with other families, staff, inspiring, supportive”
- “Archery and blind running line – very entertaining”
- “My child being able to meet other children with Rb”
- “Bouncy castle! A hit with 4 year olds. Animal farm was great and really well set up”
- “Meeting the Rb community, to share experiences outside the hospital”
In answer to the question “What did you find most useful? And why?” our families told us:
- “Talking to teenagers with Rb. This has helped us to understand the journey our grandson will have”
- “The activities showed that everybody can do anything”
- “Time to share – children enjoying spending time with similar families”
- “The parent group – it was very useful meeting other parents and swapping information”
- “My daughter loved the archery”
- “It was great that you included RNIB, NAES and VICTA”
- “I found it really helpful to meet other people like me and my 1 year old brother loved the animals”
When asked “have you or your child ever felt isolated since your diagnosis?”, the majority of families agreed that yes they had. They stated also that attending the Weekend had helped to reduce these feelings, in the following ways:
- “Meeting with others to discuss issues. When I grew up with Rb I thought I was the only child in the world like me”
- “Just being around others who understand the situation”
- “Strengthened our self esteem”
- “Strengthened our relationship with other Rb families”
- Finally, we asked “how has the weekend benefited your family? What was your overall impression of the event?” Responses included:
- “I loved it, a great way for my child to mix with other Rb children”
- “Great to share experiences with other families”
- “Time away from the hospital to reflect/relax and chat to others”
- “I enjoyed it, it was fun, my best part was the amazing blind football – I was good. I liked the bouncy castle and liked meeting my new friend Harry”
We are delighted by the success of our 30th Anniversary Family Support Weekend. All of our aims and objectives were achieved as stipulated in our application to VICTA. Thank you so much for your wonderful support of the event and for helping us to enable families affected by retinoblastoma to spend much needed time together in an entirely inclusive environment. We are extremely grateful for your support.
Story supplied by the Childhood Eye Cancer Trust (CECT)