Our brave brides­maid slipped away be­side me

But we had the best lit­tle wed­ding plan­ner in the busi­ness…

Chat - - CONTENTS - Ju­lia Ha­green, 40, Hud­der­s­field

Set­ting pip­ing-hot plates on the ta­ble, I shouted up­stairs.

‘Din­ner’s ready!’ I called, as foot­steps thun­dered.

But as me, my part­ner Dar­ren, 49, and our son Ge­orge, then 3, wolfed down our tea, I re­alised Sofia, then 5, was chew­ing each mouth­ful slowly.

‘That’s it, chew it 30 times,’ en­cour­aged her sis­ter Mol­lie, then 7.

It was Au­gust 2018, and ever since Sofia had nearly choked on some cheese a few weeks ear­lier, they’d both been ex­tra cau­tious.

It had been ter­ri­fy­ing, but Sofia had been OK.

How­ever, as she splashed in the sea on a hol­i­day in Devon soon af­ter, I no­ticed she looked very thin.

Then there were times on our trip when her speech slurred or she’d throw up. ‘I’m wor­ried,’ I told Dar­ren. So I took Sofia to a doc­tor, who said it could be a food pho­bia af­ter chok­ing.

They rec­om­mended we get her coun­selling.

But she didn’t im­prove. She seemed spaced out, was still be­ing sick.

In early Septem­ber, she col­lapsed in the GP’s wait­ing room be­fore a checkup.

Rushed to hospi­tal in Hal­i­fax, Sofia was sent for a CT scan, then trans­ferred to Hud­der­s­field Royal In­fir­mary for an MRI.

I paced the cor­ri­dors for over an hour.

Later, Dar­ren and I were taken to a room.

‘It looks like a can­cer­ous tu­mour on her brain,’ her doc­tor ex­plained.

Dar­ren screamed, while

It’s an agony no par­ent should know...

I was numb.

And fol­low­ing a biopsy, we were told, ‘It’s an ex­tremely ag­gres­sive can­cer called dif­fuse in­trin­sic pon­tine glioma, or DIPG.’

Rare, too, it af­fects only 40 chil­dren a year in the UK. There was no cure.

All doc­tors could do was of­fer Sofia treat­ment to give her more time.

But she wouldn’t have more than a year.

Dis­traught, Dar­ren and I agreed not to tell her the truth about her ill­ness.

We just said she was poorly, and the medicine would help.

She’d need a course of ra­dio­ther­apy – but in the mean­time, her abil­ity to speak, eat and swal­low had been af­fected.

She wrote us heart­break­ing notes. I don’t want to die, one said.

We vowed to make as many mem­o­ries as pos­si­ble – while we could.

One was for me and Dar­ren to get mar­ried.

We’d been to­gether for over 20 years, but had never seen the point of hav­ing a big wed­ding.

But it was one tiny thing we could con­trol.

And I knew it would put a smile on a spe­cial lit­tle some­one’s face.

‘Would you like it if Mummy and Daddy got mar­ried?’ I whis­pered to Sofia that day.

‘And would you like to help plan it?’

She smiled widely and flipped open her notepad.

She’d al­ready writ­ten us end­less lists – her favourite foods, what toys she wanted us to bring to the ward.

Now she was giv­ing us or­ders for our big day.

On Daddy’s list were a suit and tie, along with in­struc­tions to get a hair­cut. Cheeky! Mine in­cluded a pretty dress and flow­ers. And as soon as we could bring Sofia home, we set about plan­ning prop­erly. While Mol­lie and Ge­orge were at school, Sofia and I would head into town. She was get­ting her speech back and all she chat­ted about was the wed­ding. She picked out the dresses – nat­u­rally her and Mol­lie’s chif­fon gowns out­shone my own. And when it came to the wed­ding ring… ‘That’s the one, Mummy,’ she smiled, point­ing at a sparkly eter­nity band in rose gold. ‘You’re the boss!’ I laughed. We fi­nally walked down the aisle on 21 De­cem­ber 2018.

It went off with­out a hitch, Sofia in her el­e­ment.

‘I’m so glad we did this,’ I said to Dar­ren at the al­tar.

‘Me too,’ he smiled. ‘She’s so happy.’

But while our day was per­fect, it was bit­ter­sweet.

Soon af­ter, Sofia de­te­ri­o­rated fur­ther.

A scan in Fe­bru­ary this year con­firmed the tu­mour was spreading.

In March, Sofia lost her sight. Dev­as­tat­ing.

But she re­mained our calm, happy girl, right to the end.

On the morn­ing of 12 April, we told Mol­lie and Ge­orge to give Sofia a kiss be­fore go­ing to school.

And that af­ter­noon, as Dar­ren and I laid with her lis­ten­ing to her playlist of songs, like This Is Me from The Great­est Show­man, she slipped away.

I can’t de­scribe the pain of los­ing our beau­ti­ful girl. It’s an agony no par­ent should know.

But we keep go­ing for Mol­lie, 8, and Ge­orge, 5.

And when­ever I look at the shin­ing ring on my fin­ger, I’m re­minded of Sofia. Her en­ergy, her smile. The wed­ding she planned and the ring she chose is a gift I’ll al­ways be grate­ful for.

Just like I’ll al­ways be grate­ful for be­ing her mummy.

To help Sofia’s fam­ily get more fund­ing for re­search, visit pe­ti­tion.par­lia­ment.uk/ pe­ti­tions/269637

Our Sofia’s sunny smile

A very spe­cial wed­ding photo

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