There is something wrong with your child.

My instinctive reaction was: no there isn’t. I hold her red health record book up with pride, as a shield: look at her achievements, look at all the ticked boxes.

But what about her words? Yes, she says a few.

When was the last time you heard her say them?

Suddenly I feel hot. I don’t know what my face is doing, I hope it isn’t betraying me to these strangers, these prodders and pokers.

For a whole year they don’t leave us alone. Speech, physio, health visitors. Lots of them. Then on a day in February I get a phone call, at work, in my open plan office.

There is something wrong with your child.

A rare random genetic condition. It’s very rare they say, with professional interest. Only 3 others in the city.

Bang.

I calmly pack up my desk, trying not to draw attention as I am the senior manager. The images in my mind of my daughter are being slowly and deliberately torn up by cruel hands. This one of her passing her exams, this one of the amazing art she’s created, this one of her in her school play.

Images I didn’t even know were there come and taunt me before they are shredded with ruthlessness. Strangely traditional ones that I find embarrassing before realising that my heart is also breaking.

Here she is dancing at a disco. Graduating from university with a 2:1. I see my only child on her wedding day, happy and in love. I see her as a mum.

I see all the love I’ve given her being passed on to a new generation. I have influenced the world, I will go on and be remembered. All that culture, from Wales and from Sweden: words, traditions, song and beauty. I see the family tree suddenly stop, end, be destroyed. The tree is burning and my anguished tears are not enough to put the fire out.

I am permitted to take the rest of the week off. A week where I sit in my dressing gown like a grey shadow of my former self. A couple of days later I was back, trying to ‘keep calm and carry on’, but my body refused. I became seriously ill, much to my annoyance.