As a survivor of bilateral retinoblastoma, I am challenged to be supportive of dear friends facing their own second cancer journey, without being swamped by fear for my own future. I imagine this is a similar balancing act for parents whose children are in treatment now, as social media increasingly brings us into contact with families struggling to access appropriate care for their child.
I thought I had a fair understanding of the difficulties faced by families whose children have cancer in a developing country, The visit opened my eyes to an entirely different world. Spending time with the families in Fiji really brought home to me the harsh realities of this situation.
People often ask me incredulously “why would parents refuse eye removed surgery if it’s the only way to save their child’s life?” This is a very important question. Understanding the complex answers helps us care for families to ensure children have the best chance of cure.
The challenges surrounding eye removal stigma are complex, but our passion to overcome them is stronger. I feel honoured to have a special eye and to be able to use it to help spread the message and save lives.
