We were facing the toughest Christmas, but some special people helped us make memories that would last a lifetime. By Naomi Tuckwell, 38
I set up the camera, then my partner Adam and I snuggled up on the sofa with baby Orla and her big sisters, Ava and Poppy.
'Smile!’ I said.
It was Christmas Eve and we were taking our traditional family photo in festive PJs.
Orla had arrived just two weeks earlier, and was the best present we could’ve asked for. Now, with our little family complete, we were ready to celebrate.
After a fun Christmas, we threw ourselves into family life and, as Orla grew, she had her big sisters wrapped around her little finger.
‘She’s a boss baby,’ Adam joked.
The summer after Orla’s first birthday, we went on our first family holiday to Cyprus. But one morning, a week after arriving home, we noticed bile in Orla’s cot.
She’d been struggling with reflux, so we took her to the GP, who reassured us it was nothing to worry about.
But over the next weeks, our usually bright, giggly little girl became tired and lethargic.
Then, she also seemed off-balance when walking, so we took her back to the doctor.
Orla was admitted to hospital while they investigated, and when her heart rate began to drop, she was rushed for an emergency CT scan.
Adam and I were terrified as we waited for news. When it came, it wasn’t good.
‘Orla has excess fluid and a mass on her brain,’ the consultant said.
‘What does that mean?’ I asked.
‘It’s likely she has a brain tumour,’ he replied.
Shock overwhelmed us as Orla was rushed to Great Ormond Street Hospital, known as GOSH, by ambulance.
'It's a life or death situation'
There we discovered she had medulloblastoma, the most common malignant children’s brain tumour, which grows at the back of the brain, near the spinal cord.
First, she needed emergency surgery to drain the fluid and relieve the pressure on her brain.
‘It’s a life or death situation,’ the doctor warned.
My heart was in my mouth as we watched our baby being wheeled into the operating theatre.
Thankfully, it was a success — but days later, Orla was back in surgery to remove the tumour itself.
‘Orla’s had an operation on her head,’ we explained to Poppy and Ava.
When she was finally well enough to go home, Adam had a surprise waiting for her.
‘This is for you,’ he said, showing her a wooden play-kitchen tied up with a red shiny bow.
She clapped her little hands together, and it soon became her favourite toy.
Once she’d recovered from the operations, Orla began chemotherapy. It made her so poorly, she had to be admitted to GOSH again. Seeing our baby girl suffering was heartbreaking.
Then one day, a play specialist came to see Orla, and she said: ‘I thought you might like this.’
It was a toy kitchen just like the one she had at home.
Orla’s eyes lit up as I lifted her out of bed to play.
‘There’s that smile,’ I said.
She became so fond of the kitchen that the staff would put it aside for her, and bring it out whenever she was well enough to play. They even called it ‘Orla’s kitchen.’
It meant so much that she was able to feel as at home as possible in such a difficult environment.
As her birthday and Christmas approached, we hoped she’d be well enough to come home. But she was more poorly than ever, so we braced ourselves to spend the festive period apart.
'There's nothing we can do'
We felt lucky when the Young Lives Foundation provided us with accommodation for two weeks in London, so we could bring Ava and Poppy with us to be with Orla over Christmas.
They couldn’t believe it when they saw the ward decorated with fairy lights, sparkling trees and snowflake banners.
‘It’s amazing,’ Ava and Poppy gasped.
The staff threw a Christmas party for all the patients and their families, and although Orla wasn’t well enough to go, Poppy and Ava had the best time.
On Christmas Eve, we made sure to take our traditional festive PJs photo, to keep things as normal as possible.
And, on Christmas Day, when they came around with huge sacks of gifts for all the children, including Ava and Poppy, it brought tears to my eyes.
We were so grateful that we’d been able to spend time together as a family, and make more Christmas memories together.
A few months on, Orla finished her treatment and rang the bell on the ward.
Although she still needed regular scans, plus speech and physiotherapy, it felt good to have her home and get some normality back.
Then, before her three-month scan, we noticed she was struggling with her balance again.
I hoped it was a symptom of the cold she’d just had, but over the next days, she became poorly again.
‘I know what this means,’ I sobbed to Adam.
Orla was taken into GOSH, where an MRI confirmed our worst fears — the tumour was back.
‘The spread is significant,’ the doctor explained. ‘There’s nothing we can do to remove it.’
We didn’t know how long she had left, but all we could do was make the time Orla had left the best it could possibly be.
The team at GOSH supported us as we chose to bring her home to Broxbourne, Hertfordshire.
Telling her big sisters was heartbreaking.
‘Does this mean Orla is going to die?’ Poppy asked.
‘Yes,’ we replied.
Adam and I held her and Ava close as they began to cry.
We held a big party, so family and friends could spend time with Orla.
Over the next weeks, we made casts of her little hands and feet and had Disney princesses come and sing to her.
When Orla’s health began declining rapidly, she was moved to a hospice.
Days later we were with her when she passed away, leaving us utterly devastated.
We’ll hold on to all the happy memories we have of Orla, and we’re so grateful to GOSH for making her last Christmas with us as magical as it could possibly be.
How you can help
The amazing staff at GOSH work around the clock so that as many children as possible can be at home with their families in time for Christmas.
However, some children will have to stay in to continue their treatment. But your support can really make a difference.
You can also donate to help make the hospital feel like a home-from-home for those at GOSH over the festive period.
All the money raised will fund support services for children and their families, state-of-the-art medical equipment, vital research and the rebuilding and refurbishment of hospital wards and buildings.
• To donate visit here