'Don't Put A Price On My Life'

Why can’t my girl have the wonder drug that could help her?

- Sarah

When my daughter Chloe entered the world in June 2012, the silence was deafening. ‘Is she OK?’ I panicked. Why isn't she crying? It’d been a worrying pregnancy. From early on, doctors were concerned about the size of her abdomen.

‘It’s one of the first signs of cystic fibrosis,’ I was warned. 

We learned that CF is a life-limiting condition that causes sticky mucus to build up in the lungs and digestive system.

It makes it difficult for sufferers to breathe, causes vulnerability to infection and there is no cure.

My husband Darren, then 28, and I had been racked with worry. We didn’t know what to expect.

‘But we’ll cope,’ Darren had promised.

In the end, Chloe had been born by natural birth four weeks early, at 8lb 1oz.

She’d been induced because of the size of her abdomen

All I could do was lie there, helpless as my baby was rush to Intensive Care. It was a nightmare. Chloe was struggling to breathe, had mucus on her lungs.

She was also struggling to have her first poo.

‘She may have a twisted bowel,’ the specialist said.

Her birth had been rough on me, too. I’d suffered excessive bleeding.

So as Chloe was transferred to Bristol Children’s Hospital for special care, I was stuck at the Queen Alexandra Hospital in Portsmouth.

It was devastating being away from my baby so early on.

Darren spent his time dashing back and forth between us.

He and the nurses kept me updated.

‘She’s doing well – I had a cuddle today,’ one said after a couple of days.

My heart ached, I just wanted to be with Chloe.

X-rays showed that she was suffering from meconium ileus.