The story of Katie

Hey my name is Katie, I was diagnosed with Retinoblastoma at the age of 2 and a half which was discovered when my Mum took a photo of myself with a flash and saw a white dot in the middle of my eye on one side which was different.

My parents took me to the local hospital first, and then they took a look and referred me to Royal London Hospital.. We didn’t think anything of it as we never even heard of the condition ‘Retinoblastoma’ before!

My parents got told by Dr Hungerford: “To save your Daughter’s life we will need to remove the eye”. Then two days later my eye was removed after approximately 8 hours operation back in 2002. Thinking back I was a young child and don’ remember any of it!

After waking up from the hours operation all I asked for was “Where’s my cup of tea?”. My family laughed! After such opp this is all I ask for.

Dr Hungerford said that I probably couldnt see from that eye since a very young age, so I possibly wouldnt noticed any difference after Enucleation of the eye any way and it wouldnt of become a big shock from being able to see with two eyes to having one eye and a prosthetic eye.

I had to wait approximately 6months for my first ever prosthetic eye at the age of 3 years old. So I went home with a clear conformer until my socket healed and to keep it clean. Until I had my first ever blue prosthetic eye fitted to match mine.

When I got my first appointment with the lady that did my eye (still the same one up to today)! I didnt like that experience at all I used to scream the place down as I knew what was coming but as I grew up I then got used to it.

I was one of the fortunate ones that didnt have any treatment! So I count myself as one of the extremely lucky ones to have survived RB without any treatment! I’m thankful also to my family who was there with me throughout the dark tunnel and having to attend many hospital appointments at the time.

Starting school was just a normal experience for me as it would be for any other 4 year old and I wouldnt of found it any difference because of having a prosthetic except attending an eye polish every now and then. I was as happy as any other child and happy enough attending school.

As I got diagnosed at the age of 2.5years old it’s not like I used to attend school in the past and could see with both my eyes. So I attended school at 4 like any other child would. I didnt used to be treated any difference to any other child really, even though I had a prosthetic eye.

I didn’t experience any bullying really as I had a great prosthetic match!

My words as a Survivor of Retinoblastoma and now living with a prosthetic eye would be – To carry on with and live your everyday life like any other child would! Be yourself with or without your prosthetic and dont let anyone tell you any difference! You should be proud of yourself! And of your scars!

I was also fortunate enough to being able to Carry the Olympic Torch Bearer back in 2012! And walk-run with it for 300meters! Which was a great experience after being nominated to carry it.

Personally I would love to raise much more awareness towards ‘Childhood Eye Cancer’ as we never know who It may effect in the future. So helping any other survivors through sharing my personal story with RB would be amazing!

As I firstly opened up about my story on 2nd of September (Childhood Cancer Awareness Month) It’s so important that others are aware of this kind of Cancer.. And that they KnowTheGlow in the eye. There’s many young inspirational warriors thats out there sharing their stories/ their children’s stories.

It’s a very eye opening opening up and talking about my own experiences with Childhood Eye Cancer. To make others aware and hopefully save a life one day.

Lots of Love Katie!🎗️💙