Retinoblastoma Awareness: Lavinia’s Story

September is Childhood Cancer Awareness Month, and people are lighting social media up with gold themed post to draw attention to this very worthy cause.

Our community member, Lucy Anne Crosbie, is a parent who has felt the impact of childhood cancer firsthand. Her beautiful little girl Lavinia was diagnosed with retinoblastoma at the age of 8 months, and has endured endless cycles of chemotherapy, transfusions, operations and hickman lines to fight against this horrendous disease. Lucy is working tirelessly to raise awareness of retinoblastoma; awareness will mean more cases are caught early enough and save lives!

Here’s her latest post in support of Childhood Cancer Awareness Month – follow Lavinia’s journey here.

GO GOLD FOR CHILDHOOD CANCER AWARENESS MONTH 🎗🎗🎗🎗 Early diagnosis is essential to treatment and outcome with all…

Posted by Lucy Anne Crosbie on Saturday, 31 August 2019

What are the signs & symptoms of retinoblastoma?

Retinoblastoma is a rare childhood cancer. It develops in the immature cells of the retina, and usually occurs before the age of 5. If picked up early, it is very treatable and 9 out of 10 children with retinoblastoma can be cured. It can affect one or both eyes. If it affects both eyes, it’s usually picked up on earlier.

The NHS lists the following as the signs to look out for…

Signs and symptoms of retinoblastoma

  • an unusual white reflection in the pupil – it often looks like a cat’s eye that’s reflecting light and may be apparent in photos where only the healthy eye appears red from the flash, or you may notice it in a dark or artificially lit room
  • a squint
  • a change in the colour of the iris – in 1 eye or sometimes only in 1 area of the eye
  • a red or inflamed eye – although your child won’t usually complain of any pain
  • poor vision – your child may not focus on faces or objects, or they may not be able to control their eye movements (this is more common when both eyes are affected); they may say they can’t see as well as they used to

What causes the white glow?

CHECT (Childhood Eye Cancer Trust) has shared some really useful information on the cause of the white glow that is the best known marker retinoblastoma.

“The medical term for this white eye reflex or reflection is leukocoria (leukos means white and kore means pupil). In humans it occurs when there is an abnormal light reflection in the eye. It will show up most often in photographs, or in low light levels.

Seeing a white glow in your child’s eye can be extremely worrying, but please remember that retinoblastoma is very rare – around 50 cases are diagnosed in the UK every year – and there are several other causes of white eye. But to rule out anything serious, we always recommend that if you do spot anything unusual you have your child checked out by a health professional as soon as possible. If you would like to speak to one of our support workers about any concerns you have about your child’s eyes, please call us on 020 7377 5578.

If you’ve seen the white reflex in a child’s eye in a friend’s photo and you’re worried about whether you should say anything to them, you may find our page seen a white glow in a photograph? useful. The direct link to this page, if you would like to share it with a friend or relative, is”

If you have any concerns about your little one, please don’t hesitate to get a GP appointment.

Please share this far and wide to raise awareness of retinoblastoma, and save lives!

Love from Katie & Team BBY. Xx