Donna’s story: retinoblastoma

20 April 1964 was the day that changed mine and my family’s life forever. At the time my dad was working away. During one of his calls home, my mum mentioned that she thought there was something not quite right with my eye. She said she could see a light shining from behind my eye, so they decided to take me to the doctor. I was examined by my local GP, however, he wanted a second opinion from one of his colleagues.

They believed I had a retinoblastoma – a rare form of cancer that develops in the retina.

Our local hospital confirmed this diagnosis and transferred me to Moorfields Eye Hospital in London. This all took place within three days of my doctor’s appointment and I subsequently had an operation to remove my eye. One of my clinicians wrote an article in the Lancet about my retinoblastoma.  I was told that at that point in time only two people were affected by this condition – myself and a girl from Canada. The stress for my parents was immense.  I had an older sister who needed to be looked after whilst my parents came to London to see me.

The day I was left in the hospital will forever be etched on my mind – a long corridor with lots of doors, walking down with my mum and dad. I remember turning into a long ward with beds on each side and a very large fish tank against the wall.

I went through to another ward where there was a long table down the middle, with cots on both sides. Behind the door was a bookcase filled with lots of toys, and a big cuddly doll thrown on the top. Quietly we went into the matron’s room and my parents left. As the door closed behind me, I realised I was now there without my parents. I cried until the matron picked me up. I looked out of the window down onto a car park searching for my mum and dad, but I never saw them. This was the beginning of my rare disease journey.

During my time in the hospital I had my right eye removed. I didn’t really know how much my life would change as this all took place while I was only two years old.

From that point onwards I would visit Moorfields Hospital regularly and had a prosthesis fitted. When I was about four my doctor said he would give me a pound if I could remove my right eye on my own. Little did he know I could already do that so off I went with the money in my pocket. My eyes were handmade and they used to colour them for me as well.

Every time we went to London the train would be really busy so my mum would normally carry me because no one would give up their seat. Once at Waterloo station we would rush across the road to get the 72 bus to the hospital. I remember at the hospital there would often be a wait of at least three hours. You try to keep a young child occupied for that long! I have to say a huge thank you to my mum, who I love dearly. When I was getting married and hoping to start a family I was advised that retinoblastoma was hereditary condition, and that my children would need to be screened from birth. I have to say, after this challenging start, life has been good to me. It could of been a lot worse. I am now 57 years old with two children and two grandchildren and life couldn’t be better!

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