Retinoblastoma (RB) is a rare type of eye cancer that affects children under five. Sadly, most children will have the affected eye removed to save their life and are vulnerable to further cancers later in life. Families affected by the condition can feel incredibly anxious and alone.
The Childhood Eye Cancer Trust (CHECT) is the only charity in the UK that exclusively supports babies affected by RB. Every year, the charity provides over 2,000 hours of emotional and practical support to more than 500 families. They provide a listening ear for shocked and frightened parents, drive earlier diagnosis through raising awareness of the disease and help to fund research into treatment and care.
Little Tyraah Bell-Lama was diagnosed with RB in 2015, and needed six rounds of chemotherapy followed by cryotherapy and laser therapy to save her eye. Her mum, Jade, was allocated support worker Lesley to help her through the process. She said:
“Lesley explained how she could support me emotionally, provide help with financial support and put me in touch with another family in a similar situation. She was at the hospital at each of our appointments and always made time to come and see us. I don’t like to ask for help and I always try to do everything myself, but when you go through something like that you can feel so alone, like you’re by yourself. It was such a comfort to know that Lesley was there if I ever needed her and that if I had any questions I could ask her.”
Global’s Make Some Noise is proud to help deliver a programme of additional support for children and families affected by RB, with the aim of helping 100% of newly diagnosed families cope with the journey ahead.