Orla’s story: diagnosed with a rare brain tumour when she was one-year-old

Orla was diagnosed with a rare brain tumour when she was only one-year-old. She went on to have multiple surgeries and high dose chemotherapy treatment at Great Ormond Street Hospital in London but sadly, in August 2023, Orla died at just two years old.

While Orla was having treatment, her mum and dad would alternate between being by Orla’s bedside in hospital and at home with her two sisters, Ava and Poppy. Their Young Lives vs Cancer specialist social worker Becca supported the family throughout Orla’s treatment. She helped arrange for Orla’s sisters and a parent to stay at Paul’s House, one of our Homes from Home, at the weekends and during school holidays so they could be together.

Orla’s parents first started to notice she wasn’t well after a family holiday in August 2022.

“In the car journey on the way home from the airport about 2am in the morning she threw up and you put that down to time and travel sickness and then a couple of days after that she vomited again. It happened a couple more times and Naomi took her to the doctors and was told to monitor it, as she’s a toddler it’s quite common, it could be a bug so just keep your eye on it.

“This kept happening and it got to a point where it got progressively worse. We noticed she was a bit unsteady on her feet and a little bit lethargic at times – we both said ‘enough’s enough, we’re taking her into hospital again and we’re not leaving until we find out what’s going on with our baby’. That led to ten days in our local hospital where she was getting progressively worse.”

Orla later had a CT scan, which showed she had a tumour.

“We were so shocked when they said there was a mass on the brain, we knew nothing about brain tumours, especially pediatric, it’s even more rare and what Orla had was even rarer.”

Orla was transferred to Great Ormond Street Hosptial where they were told they needed to operate on Orla as soon as possible. A few days later, Orla went on to have another surgery, which was nine hours long.

Her parents were later told the official diagnosis – Orla had a medulloblastoma and would need to start chemotherapy treatment. She went on to have six months of treatment.

Orla’s parents would alternate between being with Orla in hospital and at home with her two sisters, Ava and Poppy.

Orla’s family were supported by a Young Lives vs Cancer specialist social worker, Becca, who arranged for them to stay in Paul’s House on weekends and in school holidays, so they could see each other. Paul’s House is a Young Lives vs Cancer Home from Home nearby to Great Ormond Street Hospital, and being able to stay there helped them to be close together.

“It’s hard to explain but when you’re going through something so devastating, many things get broken instantly. One of those is being together as a family. But having Paul’s House fixed that for us. It took away a lot of pressure, because we weren’t just isolated in a hospital room. We could stay at the Home from Home and be a family.”

Orla was in hospital over Christmas time in 2022. Her mum and sisters stayed a ten-minute walk away at Paul’s House on Christmas Eve so they could wake up and be with Orla in her hospital room as soon as possible on Christmas morning.

“It’s not the place you want to spend Christmas morning in a 6×4 hospital room but it meant we were all together. We could open presents together and play some games, it made a big difference.”

Their Young Lives vs Cancer specialist social worker Becca also supported the family throughout Orla’s treatment with financial and emotional support.

“They did things like helped us understand the disability allowance benefit to cover things like travel costs, any hotel costs, accommodation, having to pay to eat on a daily basis when looking after your child in hospital, helping with things like blue badge as parking at Great Ormond Street in central London is a nightmare.

“To help us establish the appropriate benefits within a few weeks to a month of this all happening was amazing.”

By April 2023, Orla’s parents were given the news from an MRI that there was no evidence of disease and they could go home. They celebrated with a trip to Centre Parcs with their family. However, a couple of weeks later, Naomi noticed Orla wasn’t quite herself again.

“She seemed a bit unstable again and before we knew it, we were in our local hospital and before we knew it we were in another ambulance being blue-lighted to Great Ormond Street and being told the disease had come back.”

They were told there were sadly no other treatment options and to go home and spend the time they could with Orla.

“When we returned home, we didn’t know how much time we had, but we were able to spend some special moments together as a family. Orla had a visit from her favourite Disney Princesses, she sat with her sisters, family, friends and was surrounded by love and warmth. To our devastation though Orla deteriorated rapidly, she stopped eating, she stopped sitting up and then eventually she lost consciousness at home. We then moved into a children’s hospice where we were able to spend Orla’s final days together as a family.”

Orla sadly died at two years old in August 2023. Her family are sharing their story to raise awareness of the realities of childhood cancer and how the support from Young Lives vs Cancer is vital for families, like theirs.