Written by Talia’s mum, Gemma
Talia was a competitive dancer, winning titles up and down the country. Towards the end of lockdown, she started to complain of back pain. I remember her lifting her top up and I could clearly see an imbalance in her hip and shoulder placement. I took her to the doctor, who referred her to Birmingham Children’s Hospital (BCH). After an X-ray, it was clear she had scoliosis, with a 26-degree curve at just 12 years old.
Talia was referred to a specialist who ordered an MRI to rule out any other underlying conditions. He said it was just a precaution. The MRI took place in October, and we assumed no news was good news. Then, four months later in February, I received a phone call from Talia’s specialist. He delivered news we never expected: Talia had a rare brain condition called Chiari Malformation, which had caused a secondary condition called Syringomyelia—fluid-filled sacs (syrinxes) inside her spinal cord. These had created abnormalities in her spine and triggered the scoliosis. He told us she might be advised to stop dancing, and there was a chance she’d need brain surgery. Talia’s world fell apart. We didn’t fully understand everything that was being said, but what we did understand was that dance was her life – and suddenly, it was under threat.
Shortly after, Talia began experiencing debilitating headaches and lost sensation in her right arm. Her neurosurgeon ordered an emergency MRI, which confirmed that the syrinx had grown and was now responsible for the loss of sensation. He was deeply concerned that it could worsen, leading to life-altering symptoms like bowel and bladder dysfunction or even paraplegia. At just 14 years old, Talia underwent brain surgery to create more space for the fluid to flow. It was a tough procedure, but she was discharged after eight days and continued her recovery at home.
We were initially delighted with how well she was doing, but on day five of her recovery, she was suddenly overcome with excruciating head pain. She couldn’t lift her head from the pillow, and pain relief wasn’t working. We rushed her back to hospital, and a CT scan revealed she had developed meningitis and hydrocephalus (fluid on the brain) as complications from surgery. Despite the medical team trying everything they could, she deteriorated and became unresponsive. She was taken into emergency surgery once again to create a new fluid pathway in her brain and drain the excess. She spent another seven days in hospital recovering.
At Talia’s next neurosurgery appointment, we were dealt yet another blow. They had discovered something that had previously been missed: she was born with mild craniosynostosis, a condition where the soft spot on a baby’s head fuses too early. It had gone undetected because she didn’t present with the usual textbook signs. They explained that her brain was too big for her skull, and this had set off a butterfly effect of conditions – including scoliosis. A major operation was discussed to make more space in her skull, but Talia declined. All she wanted was for her spine to be straight.
Twelve months later, aged 15, Talia underwent spinal fusion surgery for her scoliosis. The call came just five days before the operation. Initially, the plan had been to go through the front, but a last-minute decision was made to operate through the back instead, due to a lower risk of paralysis with her syrinx. The recovery was brutal. It was her hardest surgery yet, but she fought through it and amazed us all once again.
Talia made a vow that she would return to dancing and competing. Her dream was to gain a place at BOA – Birmingham Ormiston Academy – a prestigious dance college. The competition was fierce, but she achieved her goal and will start her A-levels there in September. She’s back competing already and has won numerous competitions, despite the physical restrictions she now lives with.
Talia’s journey has been anything but easy, but her strength, resilience, and love for dance have carried her through it all. We couldn’t be prouder of everything she’s overcome.
