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Miguel Pais, aged 15

Miguel Pais

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The following article is written by 15-year-old Miguel Pais about his experience of growing up following a diagnosis of retinoblastoma (Rb).  Miguel first wrote to us when he was 11½ .  If you want to read this earlier story you can find it

here.

 

Hello! My name is Miguel Pais, I'm 15 years old and I live in Portugal. I was diagnosed with the non-genetic form of retinoblastoma (Rb) when I was three years old and this is my story...

Let me begin by saying how perfectly happy I am. I'm a normal boy with normal hobbies, like any other teenager. After my Rb was detected here in Portugal, I was treated in St Bart's and I had my right eye removed, thus losing my vision in that eye. I must say I would be an entirely different person if I hadn't had Rb – and I don't mean this in a bad way, AT ALL.

I have always been proud of myself for managing to be just like anyone else – and my friends always understood that I had no problems with having just one eye. I always think: "well, it could be a lot worse... I could've lost a leg". I know that you will think that I shouldn't joke about this sort of thing but that's just who I am – a funny boy who knows how to live with what has happened in the past.

As I was just a baby, of course, I can't tell you much about my treatment because I really just don't remember; I have a fuzzy memory of me waiting in my dad's lap for an appointment and I remember my hair falling out because of the chemotherapy .

I can, however, tell you about the experience of growing up with Rb. As difficult as most people think it must be, it's absolutely fine. It's all about strength – and as much as it can sound a real cliché, it's really about having faith and believing it won't be such a big deal.

Some children may mock you, or even make fun of you – this tends to happen more often with little children, but if your friends aren't supportive or if you find someone who likes to tease you, then REALLY don't let it bother you.

We – the fighting ones, I believe – are way better than that. They just don't understand, and we shouldn't bother ourselves trying to force them to. I'm comfortable with who I am (and so should everybody be), I can react well to the questions people ask me, and I'm more than happy to explain everything they want to know.

As a parent, I think it must be a terrible pain seeing your child suffering. My parents told me how they felt back then and I can imagine it too. But believe me – I've been through it, and yet here I am with goals and a whole life ahead of me – and so much to be proud of!

I grew up learning to explain to people why I had no vision in one eye and all of them understood that I was no less of a person because of that. It is possible in the future I may have some problems driving, as I don't have vision in the right side; but other than that I'm expecting a full and interesting life ahead of me.

About me... What can I tell you? I go to the local high school, which is near the sea and the beach. I make friends easily and I'm almost always laughing about something. I really like philosophy and maths, and I hope to go to college and become a psychologist or a psychiatrist someday. I practice sport sometimes and I love music (I play the piano). I also love writing – I would like to develop some minor writing projects and maybe someday turn them into a book.

And that's 'My Story'. As you can see, my life is as it should be – filled with people who love me and with interesting activities that Rb hasn't stopped me from doing. And when someone asks if I care about my "condition" (that is, if you can even call it that)... I simply smile and answer – no, I don't. And I couldn't be happier.

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We, at the Childhood Eye Cancer Trust, know that Maria is over the 12-18 year old age bracket but we asked her to write about her life during that period so that you could read about her experiences.  Maria's story is also good to read if you are a parent of a young child with Rb as we asked her to include tips about starting a new school and about other things such as using make-up, boys and driving.

Maria Tattersall

Maria was diagnosed with Rb in her right eye when she was a baby and had her eye removed. She offers advice on how to cope with an artificial eye throughout school years and into adulthood.