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!

What is Retinoblastoma?

Retinoblastoma is a rare type of eye cancer that can affect small children, usually those below the age of 5. Picked up early, retinoblastoma can often be successfully treated with a normal healthy lifespan! It's reassuring to learn that more than 9 out of 10 children with the condition are cured.

The NHS says that; 'Retinoblastoma can either affect 1 or both eyes. If it affects both eyes, it's usually diagnosed before a child is 1 year old. If it affects 1 eye, it tends to be diagnosed later (between the ages of 2 and 3).

What are the signs and symptoms of retinoblastoma?

an unusual white reflection in the pupil; it may resemble a cat's eye reflecting light. It is often spotted photos where only the healthy eye appears red from the flash. You may also notice it in a dim or artificially lit room.
a squint
a change in the colour of the iris
a red or inflamed eye, uusally not painful
poor vision; poor focus and control of eye movements

If you're concerned that your child may have retinoblastoma, please seek urgent medical advice.

Find out more about retinoblastoma here.

Here’s one of her posts sharing the story of Lavinia's diagnosis and treatment – follow Lavinia’s journey here. Lucy often shares updates about Lavinia and her progress in her treatment, which we follow avidly!

The Childhood Eye Cancer Trust has also shared Lavinia's story to raise awareness.

The Childhood Eye Cancer Trust (CHECT) is the only charity in the UK solely dedicated to helping families and other people impacted by retinoblastoma. They provide support, raise awareness and fund research into prevention of retinoblastoma as well as advances in treatments for this cancer.

Originally published on 02.09.2019

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