Ethan and Lucy Carr - CHECT real life story
Ethan and Lucy Carr

Ethan’s story by his mum Josephine.

Ethan Carr was diagnosed with Rb in July 2013. He was four.

His story started one Friday afternoon on an outing with his nursery; one of the accompanying parents thought she noticed a reflection in his eye.

Over the weekend, my husband Ash thought he saw something at the dinner table but couldn’t make out what it might be. As Ash had an appointment with our GP on Tuesday, we thought he’d take Ethan along to get it checked out.

The last thing we expected was to be told that Ethan was blind in his right eye; and even then we presumed it was a cataract, or something else that could be operated on.

We were immediately referred to a consultant who saw us the next day, who referred us on to the Royal London. That Friday we saw Mr Reddy, who confirmed that Ethan had Rb, that the sight in his eye was irrecoverable, and that – given the size of the tumour on first examination – enucleation was most likely.

Ten days later, Ethan did indeed have his right eye removed.

Despite the tragedy of it all, though, there are many things to be grateful for.

As it happened so quickly, there was no real opportunity for any of us, including Ethan, to think of him as being unwell. On our visits to the hospital, he simply kept asking if the doctors would bring back the colour in his eye. And whilst at home and at school, he was running around doing exactly what he always had done. None of us could believe that he had monocular vision – there was no loss of depth perception, nothing Ethan had mentioned to give us any cause for concern. And so, it was both incredibly important (and incredibly difficult) to just let him be himself.

In fact, in between diagnosis and his operation, the school had their summer sports day. Ethan got a commendation for going back to help up one of his classmates who had tripped over during one of the races; it’s something he and his friend still talk about now. Furthermore, even when he realised what was happening – and during his recovery – Ethan’s strength of character has really shone through.

He hasn’t wavered once. He’s accepted the fact there are some things he can’t do – (going down water slides on holiday for example) because we need to protect his seeing eye – and he enjoys the other activities that we have found for him, including rock climbing and archery.

Indeed, according to Ethan, the only thing his artificial eye has stopped him from doing is “seeing things in 3D”! He takes full responsibility for the care of his eye while he’s at school; and he is confident in explaining to adults and his friends alike why he has to wear his sports goggles, which are “really cool”, and why he’s just that little bit unique.

But ultimately we’re grateful for our family. Ethan and his older sister, Lucy, enjoy life together. Ethan’s going to be six in 10 days’ time; he is a proper little boy, who wants to be a professional archer when he grows up.

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