A let­ter to… My lit­tle princess

Mem­o­ries

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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.

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