Just before little Indy Glover celebrated her fifth birthday in the summer of 2023, she had a seizure so severe she appeared to stop breathing and turned blue.
Her frantic parents were forced to administer CPR for 10 minutes to keep her alive as an ambulance rushed to the scene.
‘It just came out of nowhere,’ explains her mum, Hayley Davies. ‘Before that, she’d always been fit and healthy. I’d picked her up from school, it had been a really hot day, and I could tell, beforehand, something wasn’t right with her. What happened just flipped our whole world upside down.’
Fortunately, Indy survived that terrifying ordeal – yet it would prove to be just the tip of a traumatic iceberg which would, ultimately, lead to her having seven-hour surgery to remove a quarter of her brain.
Because over the months that followed, the family, who live in Whitstable, Kent, would see the number of seizures escalate, albeit with less severe symptoms. At its peak, she was suffering more than 50 a day – incredibly able to tell her parents, Hayley and Paul, when one was about to strike.
Hayley says: ‘She would say, ‘Mum, one is coming’. It happened, day and night. And then, as soon as it finished, she’d say ‘it’s gone’.’
Initially, medical teams at the QEQM Hospital in Margate assumed it was epilepsy and started to treat the symptoms.
‘Her longest seizures lasted an hour and a half but none of the drugs they gave her to stop them worked, ‘ says Hayley. ‘Then she’d go through what’s known as a ‘honeymoon period’ where she’d be seizure-free for a day or two – then they’d start again.
‘She ended up being on five different epileptic medications, three times a day. This huge burden of medication meant she just had zero quality of life.
She was almost comatose on the sofa every day or a hospital bed. She had no spark – she was just a shell of herself.’
For her parents, the pressures were intense. Her mum says: ‘Because she was having seizures all day and night, there was no opportunity to sleep. We also had her younger brother, who was two at the time, who wasn’t even in nursery. I lost count of the times we had ambulances here. It was just constant.’
Hayley had to stop working for her jewellery design business to focus fully on her daughter. Eventually, after ‘fighting tooth and nail’, Hayley managed to get her daughter referred to specialists in London.
Staff at Evelina London Children’s Healthcare took her case on. Working alongside experts from Great Ormond Street Hospital and King’s College Hospital, her parents kept intricate records of the seizures, while medical gear was attached to Indy to try and gather data as to just what was happening to her.
Eventually, a scan revealed a slight enlargement on one side of her brain. The dilemma was the specialists couldn’t be sure of what they faced without a biopsy – which meant brain surgery was the only option and only at the point of surgery would they be sure of what the underlying problem was.
They determined the potential best course of action would be the removal of her left temporal lobe – a large chunk of the brain which they believed was causing the seizures. But that came at a potential risk – to her eyesight, mobility, memory and future learning ability. The consultants also had to weigh up if the benefits outweighed the risks.
‘That was probably my most terrifying point because it was very much if she can’t have surgery, then there isn’t anything they can do,’ remembers Hayley. ‘None of the drugs were working. Each time she had a seizure – especially the long ones – it was damaging her brain. I knew she couldn’t go on like that.’
Finally, in January, six months after that first seizure, the medics agreed she should go on the waiting list for the operation. It wasn’t until the following February that she couls have the operation.
For seven nerve-wracking hours, her parents waited as surgeons removed almost a quarter of her brain. Not only did they remove the left temporal lobe but also the hippocampus too – part of the brain which helps with memory.
Hayley explains: ‘When they went in, the surgeon told us there was so much scarring they had to remove more than what they had expected. So they removed everything that was scarred that seemed to be safe.’
But there was one final cruel twist. Shortly after she awoke from surgery she suffered two further seizures. They would, however, be her last. Doctors had expected it as a result of such an operation and, two years later, she’s not had one since.
Indy’s balance and short-term memory were impacted in the months that followed, while it took a year to wean her off the powerful drugs she had been on in an effort to treat the seizures before the operation. She missed an entire year’s schooling as a consequence.
Hayley is now trying to help other children and parents in a similar position with a new business MyRealFairies selling fairy ‘companion kits’. The idea was inspired by the magical messages she used to comfort her daughter in hospital.
For each one purchased, a care fairy box will be donated to a child in the Evelina London Children’s Hospital or Great Ormond Street Hospital – who played such a key role in Indy’s recover
Today, Indy, now seven, has made, remarkably, a full recovery.
Hayley says: ‘The surgery in itself was a miracle, but it completely worked; it healed her. She had thousands of seizures before the surgery and it’s a miracle that didn’t cause any long-lasting brain damage.
‘She is just the most wonderful child – beautiful inside and out.’
