A DECISION mother should have to make no

Stephanie Nimmo knew that her daughter's time had come to an end

- STEPHANIE NIMMO

"They should make a film about our lives,' I would often say to my children when they were younger. 'The problem is, it's so unimaginable that I doubt anyone would want to do it.'

'But if they did,' I would add, optimistically, 'I'd want Sharon Horgan to play me.' At which point, the conversation would veer off at a hilarious tangent as we discussed who would play each member of our family.

We welcomed Daisy into our lives on 22 December 2004. She was born prematurely and spent the first eight weeks of her life in the hospital's neonatal unit. At the time, I was working as a marketing director and our other children were aged seven, five and two - now, we had thought our family was complete. Instead, that Christmas was the moment everything changed forever.

Daisy struggled to feed and absorb nutrients, and the neonatal doctors became concerned there was more going on with her than just prematurity. Genetic testing confirmed that she had a rare disease called Costello syndrome.

The disease is caused by a random gene mutation, as opposed to anything she had inherited from us. We were told that our odds of having a child with the syndrome were one in a million. It soon became clear that Daisy was at the extreme end of the disease and her doctors weren't sure if she would even make her first birthday.

For me, there was no option. I gave up my career and became Daisy's full-time carer. I had really wanted to return to work - in hindsight, maybe my husband Andy and I could have divided up the caring responsibilities so that I could have returned part-time. But, at the time, I felt we were on a speeding train and Daisy needed all of my focus.