I love it when children get their words mixed up.

The things they can say with pure innocence always brings a smile to my face. I picked the kids up from school yesterday and as soon as the car doors were closed Livvy pulled her mask off and told me that her friend at school had told her that ‘she is inspiring of her’.

With a smile, I asked her again what she had said, ‘my friend is inspiring of me’. I knew what she meant but was a little unsure who was inspiring who.

So I played dumb (which is never hard for me) ‘what do you mean Livvy?’

‘Well my friend, well she would like to be me, she thinks I’m brave and I am inspiring her’ my heart melted, at six years old the kindness and understanding was overwhelming.

I’m always fearful for Livvys future, wearing full UV protection as she does daily must take a toll on her own sense of self. I knew the key would be in her peers, most of her class mates knew Livvy before diagnosis and went through the journey, as we did, of understanding and learning to protect Livvy.

I’d never really thought about the effect it may have had on her friends and their parents. Of course Livvy questioned her own mortality in the early days of diagnosis. But perhaps her friends had too? I know I had as Eddie had too. We all did.

I’ve been in school when the classroom door has been opened, you see heads turn and little voices shouting Livvy’s name, they may not fully understand XP or be able to say xeroderma pigmentosum but they know what opening the door when Livvy is present means. They protect her and look out for her. They’ve all been on this journey with Livvy and as their understanding grows I hope that they continue to look out for Livvy. I hope that Livvy takes strength from having strong friendship groups, she’s had to adapt so much over the past year and I’m so proud not only of her but all her friends that continue to support her and allow her to be just another 6 year old. They are their own inspiration.




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