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Hayley is mum to Addy who has CLN2 and her big brother Samuel, she tells us how his poem came to be

This poem came out of Samuel and I chatting one evening and him asking “What do you think Addy would be if she didn’t have Batten disease?” That word, “if”.

The word plagues our thoughts and moments. Every holiday. Every visit to family and friends. Even at home on a weekend. The thought creeps in “if  Batten disease wasn’t part of our lives what would this moment look like?” Usually I find it too hard to think on this and have to shut down that thought path. It’s hard enough when it’s just me thinking, but to hear her unaffected sibling’s broken heart too in the midst of his wonderings is brutal.

I let him talk and pray that I ask him the right questions to help him share his pain and that as I share of my own, I would say helpful things for him to know he’s not alone and can always share anything with us.

This poem was born out of this moment as I reflected on our sharing.


Where to put these ghosts?

These uninvited guests?

These ghouls born from a hope

Of a wholly imagined best.

The girl we thought she was…

The girl she used to be…

The girl she might become…

Has left footprints all over me.

I’m haunted by her presence,

I’m hollowed by her absence.

The new day conjuring new ways

To taunt us with ever fading pictures.

Weeds have overtaken dreams

Watered with tears’ steady stream,

Whispered voices, thick as fog

Reminding us of all we’ve lost

And all we’ll never have.

This our life, a shadowed trick

When all our thoughts begin with


By Samuel, Big brother to Addy

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