Where Do Genetic Diseases Come From, Mom?

June 13, 2013

I’m excited. Birmingham Children’s Hospital is opening a gene therapy unit in July.

I tell Will.

‘What’s gene therapy?’ he asks.

‘I don’t know,’ I admit, ‘but I do know Finnan’s genes need it.’

I start to imagine little men genes, queuing up to lie down on a psychchiatrist’s black couch.

‘What are genes, Mom?’ my two eldest ask.

‘Genes are instructions that tell your body how to build itself.’

Mmm, that sounded good. I impressed myself with that line. I warm to my subject and make some space on the coffee table. I get two sachets of coffee and place them on the table.

‘That’s Daddy,’ I explain, ‘he’s got two sets of genes.’

I get two more sachets and place them next to Daddy.

‘That’s Mommy. She’s got two sets of genes too.’

The kids eye me wearily, sensing that I have gone into teacher mode, and there will be no escape until they pass an impending quiz.

‘Now, when they make a baby,’ I add coffee sachet smooching with sound effects, ‘they each give one coffee sachet to the baby.

So you got one from Daddy and one from Mommy, and now you have two each, and they give your body instructions on how to build itself. Got it?’


‘But Mommy and Daddy have special genes. They have a mutation on one gene and this means one of the coffee sachets changes into a tea bag.’

I remove one coffee sachet from Mommy and Daddy and replace it with a tea bag.

‘Now, when Mummy and Daddy make a baby, the baby either gets a tea or a coffee from both parents.’


‘So you might get a coffee-coffee, a coffee-tea, a tea-coffee, or a tea-tea.’

Less nodding.

‘You two got at least one coffee from Mommy or Daddy, so you’re both fine, but Finnan got two tea bags, so he got the disease which means he’s not strong.’

My eldest says, ‘So if you don’t get a coffee, you get like Finnan?’


Two days later, the kids have forgotten all about genes.

But Will hasn’t. I hear him bend down to Finnan and whisper.

‘I love you, two tea bags.’

About Julia Boonnak

Mum to Finnan (CDG 1a ), Julia currently lives in Thailand but will move back to the UK this summer.

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