'My girl, 5, had quarter of her brain removed - it was only way to save her'

Just before little Indy Glover celebrated her fifth birthday in summer 2023, she suffered a life-threatening seizure that left her blue and not breathing, prompting her parents to perform CPR for an agonising 10 minutes until the ambulance arrived.

Her mum, Hayley Davies, shared the horror of the incident: "It just came out of nowhere. 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."

Miraculously, Indy pulled through that harrowing experience - but it marked the beginning of an ongoing ordeal that resulted in a seven-hour surgery to remove a quarter of her brain. As the months went by, the girl from Whitstable, Kent, experienced repeated seizures, although none as extreme as the first one, with the number reaching up to more than 50 a day.

READ MORE: 'Her daughter saved my life before she died - now I'm keeping my promise'

READ MORE: 'I founded Omaze after dying in hospital and what I saw has never been explained'

She could even alert her parents Hayley and Paul as a seizure approached.

Praising her daughter's strength, Hayley said: "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, doctors at QEQM Hospital in Margate treated her symptoms as epilepsy.

"But, as a mum, I just knew there was something more. Something in my gut was telling me there's something going on. They started on medication, trying to determine the right drugs to treat it, when something just clicked in her and she started having seizures every single day. It started with five a day, then 10, 20, 30, 40 and then 50.

"Her longest seizures lasted an hour and a half but none of the drugs they gave her to stop them worked. 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.

"They'd change the medication and then it became very clear she was drug-resistant. It was like pouring warm water on boiling water. It would maybe soften and simmer it for a day or two and then it would pick up 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 said: "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 put her jewellery design business on hold to fully concentrate on her daughter's health. After a relentless struggle, Hayley succeeded in getting her daughter referred to specialists in London.

The team at Evelina London Children's Healthcare took up her case. Collaborating with experts from Great Ormond Street Hospital and King's College Hospital, her parents meticulously recorded the seizures, while medical equipment was attached to Indy to collect data about what was happening to her.

Hayley said: "They did more MRI tests and lots of others, like lumbar punctures, but Indy was incredible and never cried."

Eventually, a scan revealed a slight enlargement on one side of her brain. The predicament was that the specialists couldn't be certain of what they were dealing with without a biopsy, which meant brain surgery was the only option, and only during the operation would they be sure of the underlying issue.

They concluded that the potential best course of action would be the removal of her left temporal lobe - a significant part of the brain, which they believed was causing the seizures. But this came with potential risks - to her eyesight, mobility, memory and future learning ability.

The consultants also had to consider if the benefits outweighed the risks. For Indy's parents, as they awaited the decisions of the medical experts, they knew the stakes were high.

Hayley said: "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. 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 initial seizure, doctors decided to put her on the waiting list for surgery, with a warning that it could take up to a year. Meanwhile, the seizures didn't let up, landing the young girl in hospital nearly every week.

Hayley said: "I felt, and at this point she was having 50 seizures a day, it was getting worse. She was being admitted every seven to eight days. By the last week of February she was in hospital again and they transferred her, as an emergency, up to Great Ormond Street as nothing, at this point, was working. We got there on a Friday and a few days later she had surgery."

During a tense seven-hour operation, surgeons removed almost a quarter of her brain, including the left temporal lobe and the hippocampus, which is crucial for memory.

Hayley said: "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. A lot of her brain was removed. What they discovered was that she had temporal lobe cirrhosis and that was what was causing the epileptic seizures."

But fate had one more twist in store. Waking from surgery, she endured two more seizures. Expected by doctors due to the extent of the surgery, those would become her last ever seizures. Now, it's been two years seizure-free.

Hayley said: "They don't show you the scan picture until a year has passed - and thank God they don't. Because when you see it, there's just so much white mass - where they'd resected [cut out] everything. If I'd known that, I'd have been more fearful than I was."

Recovery was a slow process for Indy. It affected her balance and short-term memory initially and took a year to get her off the heavy medication used pre-operation.

It has also caused her to miss an entire year of school. Today's a new chapter though – seven-year-old Indy is living proof of her own resilience, having made a complete recovery.

Her mum said: "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.

"The consultant explained when the brain is in so much trauma - as it was in Indy on its left side - it starts to rewire everything that side of the brain does to the right-hand side., which may explain why she emerged so well.

"Our fear was her personality - whether it would alter who she is. But it hasn't at all. After she'd healed, it was like watching her be reborn. She was just fantastic and laughing again.

"Two years on, everything is great. Now she only needs to be checked up every six months. Everyone is really happy with her. She is just the most wonderful child - beautiful inside and out."

Hayley is now trying to help other children and parents in a similar position with a new business, MyRealFairies, selling fairy companion kits. Coming in three different versions, all are designed to get young children off their screens and get creative.

Inside is the gear to make a fairy dwelling, a special fairy 'potion' and, of course, an envelope 'for adult eyes only' which contains special scrolls for parents to 'channel their inner fairy' and leave messages on.

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 recovery.

Each kit is made by Hayley and will be on sale via her website.