Fighting For Our Fairy's Future

Time is running out for our Fia, but we won’t give up

- Lian Kent

A fairy is a delicate thing. But a fairy’s wings are as strong as steel. Or at least, our Fia’s are. She’s 4 years old. Our youngest child.

And she wears her fairy wings to the park, the shops, to play with friends…

Yes, they’re sweet, delicate. But they’re a constant reminder of how strong she is.

How strong she’s had to be.

Last year, when she was just 3 years old, our Fia was diagnosed with Alexander disease.

Ever since she’d been born, me and my husband, Matthew, 44, were convinced there was something wrong with Fia.

With three older kids, Fraser, 10, Freddie, 7, and Florence, 5, we knew what babies were like.

When they start gurgling, when they start wrapping their fingers round your thumbs.

Fia didn’t do any of that.

Plus she just couldn’t keep her milk down.

We were out of our minds with worry. But the doctors didn’t know what was wrong.

‘Have you tried changing her formula?’ one asked us.

I was sure it wasn’t that.

Matthew and I trawled Google looking for answers.

Cerebral palsy, Rett syndrome... We were clutching at straws.

Fia was growing up, and missing her milestones.

She could walk but she was slow and often tripped, and her speech was behind what it should’ve been.

But, though Matthew and I were up all hours fretting, Fia was happy.

She adored dressing up.

‘I’m a fairy!’ she’d say every morning.

And she had bottom-pinching down to a fine art!