A mum whose five-year-old daughter had to have a quarter of her brain removed after having up to 50 seizures a day, has sprinkled fairy dust on a new endeavour to help other children.
Hayley Davies, from Whitstable, watched on in agony as her little Indy suffered seizures before an extensive stay in hospital to have life-saving treatment.
Remarkably, 18 months on from the seven-hour surgery, Indy is back to full health and showing no sign of any cognitive issues following the procedure.
Now her relieved mum is hoping something she came up with to help Indy through her darkest days of despair will help other children – and their parents – through difficult times.
Mum-of-two Hayley, who had to give up her jewellery business due to Indy’s poor health two years ago, explained: “We were in hospital for long periods of time with Indy.
“Day after day, night after night, you just watch your child’s light go out – they just become a shell of themselves.
“The hospitals she was in were great and would provide little moments of happiness to the children. But there was nothing consistent.
“I just kept thinking if Indy had something that she could just hold on to that was hers – it wasn’t something she had to give back, it wasn’t part of the hospital. And so I introduced her to a fairy.
“I told her a fairy had come and visited me in the night and that the fairy now was hers and was going to visit the hospital. It would communicate with her and talk to her and leave her messages; it would look after her.
“So when Indy would wake up, there would be a little message from the fairy – words of encouragement, something funny, or just praising her for being brave.
“And, oh my God, it worked. She’d wake up in hospital excited to read the message. And she’d write back – often things which she might not vocalise with me. She’d write a letter saying about how scared she was or how she didn’t like the beeping noises of the hospital equipment. And I could communicate back to her through the fairy. As a parent, it gave me some control over a slice of happiness in such an uncontrollable environment.”
Once back home and on the road to recovery, the method she’d deployed with Indy was one Hayley wanted to share with others – and not just those facing spells in hospital.
“And that,” she explains, “is where MyRealFairies comes in.”
Described as “hands-on creative, fairy-companion kits” – they go on sale from this week.
She adds: “What began as a way to bring light into our daughter’s darkest days has grown into something much bigger – a way to help children everywhere feel uplifted, empowered, and never alone.”
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.
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. She will also be selling the products at the We Sell By The Sea indoor marketplace in Whitstable High Street from July 10.
Hayley’s daughter, Indy, still writes regularly to her fairy – even after emerging from her extensive hospital stay.
It was just before her fifth birthday in 2023 when she had a seizure – her first – 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.
Over the months that followed, the family would see the number of seizures escalate.
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 said: “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.”
Eventually, after “fighting tooth and nail”, Hayley managed to get her daughter referred to specialists in London.
Staff at Evelina 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.
They determined the potential best course of action would be the removal of her left temporal lobe. But that came at a potential risk – to her eyesight, mobility, memory and future learning ability.
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 – part of the brain which helps with memory.
Hayley explained: “What they discovered was that she had temporal lobe cirrhosis and that was what was causing the epileptic seizures.“
Two years on, Indy has not had another seizure.
