I wrote a poem too :)

So tomorrow is Undiagnosed Children’s Day, for kids with genetic wossnames wrong with them, but of such vanishing rarity

genome © ISTOCKPHOTO/DAVID MARCHAL

© ISTOCKPHOTO/DAVID MARCHAL

that no-one really knows what’s up. At that point we get into frontier science and medicine. Nenna (my daughter, 6) has been submitted, along with thousands of other kids for a country wide study called Deciphering Development Disorders. The clever bods at the Sanger Institute in Cambridge sequence all the genomes and compare with ‘normal’ genomes to find differences.

So anyway, the whole thing seemed weird enough to write a poem about. So I did.

DDD

We were the ones who came first

We were the ones who spat in the tubes

Who sat in the rooms

Read letters like runes

We were the ones who came first

We were the ones with the kids who ‘weren’t right’

‘Is she MS? Autistic?’

‘No. Not really, not quite.’

We were the ones who came first

We were the ones who science scooped up

Samples taken from arms, or peed in a cup

All different, but together there’s thousands of us

We were the ones who came first

We’re the ones waiting for a drop on the mat

A negative letter makes us cheerful, not flat

We collect a long list of ‘thank God it’s not that’

We were the ones who came first

Of the ones who’ve gone on before science could match

Some are still sat in databanks waiting to hatch

We knew immortality comes with a catch

We were the ones who came first

The scientists bathed in flourescent rays

Loading supercomputers and micro-arrays

Do they know that those letters, they spell peoples names?

We were the ones who came first

But what will the ones who come after, now see?

With a light in the dark, does it make us all free?

To know or not know is the question round here

We were the ones who came first

So we huddle round bonfires of lives left behind

Meet the kindness of strangers, blind leading the blind

Better to travel in hope than arrive?

We were the ones who came first

So here’s to the ones who are travelling on

To the ones that we love and the ones who have gone

All one in a billion, but never alone…

We are the ones who came first.

Paul Arvidson

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