Family fundraising for retinoblastoma

29 Aug 2018

Parents Michaela and Aron discovered that their little boy, Johnny, had retinoblastoma – a rare eye cancer that affects young children – when he was just 18 months old.

He was rushed to The Royal London Hospital. After surgeons successfully removed the tumour, Aron and Michaela knew they wanted to raise funds and awareness for this rare disease.

Back in March, Michaela and Aron were updating the light bulbs in their house when they noticed the light glimmering strangely in Johnny’s eye. One of the signs of retinoblastoma is an unusual white reflection when light shines in the eye, known as ‘leukocoria’. Thinking that Johnny might have a cataract, they took him to see the opticians. He was quickly referred to The Royal London Hospital for scans.

The Royal London is one of just two centres in the UK that screen for, diagnose and treat retinoblastoma. In the UK, between 50 and 60 children develop retinoblastoma each year and the tumour usually develops before the child is five years old. Thanks to developments in research and treatment, more than 9 out of 10 children are successfully treated. This is one of the best cure rates of all children’s cancers.

The surgeons at The Royal London were able to successfully operate on the tumour by removing Johnny’s right eye. He has since been fitted for an artificial eye and is in good health. To thank the staff who treated him, Michaela and Aron decided to make the most of this summer's hot weather by running a family fun day. The event was filled with activities like a raffle, barbeque and bouncy castle. Through the fun and games, they were able to raise over £500 for us.

Our funding has supported The Royal London's young retinoblastoma patients in a number of ways. For example, a recent £8000 grant from us allowed the play team to bring music therapy to children with the disease. Since retinoblastoma patients often have a loss of vision, this is a great way to gain a different, positive sensory experience.

We also support the Play Team's 'Eye Club' which you can see in action in this BBC Three video: 

Thank you to Aron and Michaela for helping to fund projects like these, and we wish Johnny a speedy recovery!

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