A letter to… My little princess

Memories

What the doctors found came as a huge shock Love xx Mummy

Elaine Fisher, 39, Dudley

To say that falling pregnant with you was a surprise would be an understatement.

I was 35, and your dad Neil, 37, and I had assumed that our baby-making days were over. How wrong we were! ‘Looks like you guys will be having a little sister!’ we’d told your brothers Owen, then 18, Josh, 14, and Alex, 13, after a scan at 20 weeks had shown that I was having a healthy little girl. I was so thrilled. Though I adored my boys, I couldn’t wait to enjoy girlie days out shopping with you. And I could just picture you and me ganging up on the lads!

‘About time!’ I chuckled to your daddy. You gave us a scare, though. At 35 weeks, the doctors told us that you’d stopped growing, and I was going to need an emergency Caesarean.

You were only 5lb, but you’d let us know you were fine.

‘She’s got some lungs on her!’ Daddy had laughed.

Your big brothers had adored you straightaway, showering you with cuddles.

And whenever you hit one of your milestones, I was right there with the camera.

‘Quick, Mum, she’s about to crawl!’ Owen shouted, when you were 8 months old.

It wasn’t long before you were feeding yourself, too.

You were such a bright, brilliant girl, I couldn’t wait until you were toddling about and chattering away.

But, just weeks after your first birthday, you stopped feeding yourself, and would barely eat at all.

I tried giving you your favourites – hot dogs and porridge.

But you turned your nose up at everything.

I begged you to eat, even just a mouthful.

And, the second something passed your lips you were sick.

‘Something’s not right,’ I fretted to your daddy.

Doctors at Birmingham Hospital ran tests.

What they found came as a huge shock to us.

You had a condition called Niemann-pick type C (NP-C).

I’d never heard of it, and started crying when doctors explained that it was very rare.

It turns out that it was an inherited disorder. All your brothers were fine. But you, my darling daughter, you had it.

My heart broke, as the doctors explained that the disease would attack your brain, leading to a progressive loss of movement – you’d struggle to walk, even swallow.

‘Holly may also experience demential symptoms, such as confusion, memory problems and learning difficulties,’ we were told.

It’s often known as childhood Alzheimer’s disease.

Heartbreaking.

There was no treatment, and we had no idea how long we had left with you. Oh, Holly, I cried so hard. All my dreams of you and me sharing girlie chats, you telling me about school, your friends, boys and pop bands, suddenly vanished.

I was grieving for you over those next months.

Especially as your movement declined, and it suddenly seemed as if you’d forgotten how to do everything.

You couldn’t stand or crawl and you had to have a nasal tube fitted, so you could eat.

But, in time, as you grew and still cracked me and Daddy up with your grumpy squeals when he hogged the TV remote, your diva demands that he put In the Night Garden back on again, I realised.

How could I grieve, when we still had you here, now?

OK, so the future is unclear and not what we expected.

But you’re 4 now and still my beautiful girl, still fighting.

And I’m here, Holly, with a heart full of love for you, whatever happens.