Our brave bridesmaid slipped away beside me
But we had the best little wedding planner in the business…
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