“I just want Autumn to be happy and healthy”

Growing up, retinoblastoma didn’t affect what I could do at all. I have perfect vision in my left eye. I was never treated any differently by my parents, my siblings or my friends. Retinoblastoma is not something that I have ever really spoken about. I am quite a private person, so I don’t really talk about my personal life, but then my daughter was diagnosed. When you have retinoblastoma yourself you can push it to one side, but when you have a child who is diagnosed, it is at the forefront of your mind. Having Autumn experience retinoblastoma made me realise that there are other people going through this too.

Fight for Sight is funding stem cell research that will hopefully benefit all retinoblastoma patients. It will make the treatment more effective so that specific cells can be targeted. They are trying to work out who is more likely to be affected so they can reach people at every stage of the condition.

These conditions don’t just affect one person. When children are diagnosed it means their parents and siblings are affected too. It is massively important to support this research because it is an awful condition and it has an impact on so many people.

Autumn’s treatment is going really well. We are grateful for the stage that we are at. There are lots of parents and children who are not as fortunate as we are

In the genes

We had Autumn genetically tested on the day she was born. When she was two months old they found tumours in both eyes. We have been really lucky that all of her tumours have developed outside of the macular. None of the tumours have been around her optic nerve.

You have all these things running through your head as a parent when you go in for a child’s treatment. They look so tiny when you leave them there in a room full of strangers. It is all very alien and you feel helpless so we are massively grateful that we have a wonderful NHS. The communication has been brilliant throughout. The staff made us feel like no question was too silly. 

We would love to make parents aware of the signs to look out for. Lots of people take photos of their kids – if you take a photo with a flash and there is a white reflection on the eye instead of a red eye then that can be a sign of something going on that shouldn’t be. There can also be physical signs – swelling of the eye, redness, a silvery clouding of the pupil. Some kids will start bumping into things or not grabbing things properly. Parents might notice that their baby can’t focus on their face so well. There are little signs that you can pick up.

Autumn’s treatment is going really well. We are grateful for the stage that we are at. There are lots of parents and children who are not as fortunate as we are. I just want Autumn to be happy and healthy; that is all. If Autumn decides to have children later on down the line, and they have this condition, their future could be brighter because of this research.

• As told to Selina Powell.