Indy Glover was having as much as 50 seizures a day
Simply earlier than little Indy Glover celebrated her fifth birthday in the summertime of 2023, she had a seizure so extreme she appeared to cease respiration and turned blue; her frantic dad and mom have been pressured to manage CPR for 10 minutes to maintain her alive as an ambulance rushed to the scene.
“It simply got here out of nowhere,” defined her mum, Hayley Davies. “Earlier than that, she’d all the time been match and wholesome. I’d picked her up from college, it had been a very sizzling day, and I may inform, beforehand, one thing wasn’t proper together with her. What occurred simply flipped our complete world the other way up.”
Thankfully, Indy survived that terrifying ordeal – but it will show to be simply the tip of a traumatic iceberg which might, in the end, result in her having a seven-hour surgical procedure to take away 1 / 4 of her mind. As a result of over the months that adopted, the household – who dwell in Whitstable, Kent, – would see the variety of seizures, though none as extreme as she first skilled, escalate. At its peak, she was struggling greater than 50 a day – extremely capable of inform her dad and mom, Hayley and Paul, when one was about to strike.
Hayley stated: “She would say, ‘mum, one is coming’. It occurred, day and night time. After which, as quickly because it completed, she’d say ‘it is gone’.”Initially, medical groups on the QEQM Hospital in Margate assumed it was epilepsy and began to deal with the signs.
“However, as a mum, I simply knew there was one thing extra. One thing in my intestine was telling me there’s one thing occurring. They began on treatment, attempting to find out the correct medicine to deal with it, when one thing simply clicked in her and she or he began having seizures each single day. It began with 5 a day, then 10, 20, 30, 40 after which 50.
“Her longest seizures lasted an hour and a half however not one of the medicine they gave her to cease them labored. Then she’d undergo what’s often known as a ‘honeymoon interval’ the place she’d be seizure-free for a day or two – then they’d begin once more.
“They’d change the treatment after which it grew to become very clear she was drug-resistant. It was like pouring heat water on boiling water. It might possibly soften and simmer it for a day or two after which it will choose up once more.“She ended up being on 5 completely different epileptic drugs, 3 times a day. This big burden of treatment meant she simply had zero high quality of life. She was virtually comatose on the couch day by day or a hospital mattress. She had no spark – she was only a shell of herself.”
For her dad and mom, the pressures have been intense. Her mum stated: “As a result of she was having seizures all day and night time, there was no alternative to sleep. We additionally had her youthful brother, who was two on the time, who wasn’t even in nursery. I misplaced depend of the occasions we had ambulances right here. It was simply fixed.”
Hayley needed to cease working for her jewelry design enterprise to focus absolutely on her daughter. Finally, after “combating tooth and nail”, Hayley managed to get her daughter referred to specialists in London.
Workers at Evelina London Youngsters’s Healthcare took her case on. Working alongside consultants from Nice Ormond Avenue Hospital and King’s School Hospital, her dad and mom saved intricate information of the seizures, whereas medical gear was hooked up to Indy to attempt to collect knowledge as to simply what was taking place to her.
Hayley stated: “They did extra MRI checks and plenty of others, like lumbar punctures, however Indy was unbelievable and by no means cried.”
Finally, a scan revealed a slight enlargement on one aspect of her mind. The dilemma was that the specialists couldn’t make sure of what they confronted with no biopsy, which meant mind surgical procedure was the one choice, and solely on the level of surgical procedure would they make sure of what the underlying downside was.
They decided the potential finest plan of action could be the removing of her left temporal lobe – a big chunk of the mind, which they believed was inflicting the seizures. However that got here at a possible threat – to her eyesight, mobility, reminiscence and future studying capacity. The consultants additionally needed to weigh up if the advantages outweighed the dangers. For Indy’s dad and mom, as they awaited the choices of the medical consultants, they knew the stakes have been excessive.
Hayley stated: “That was most likely my most terrifying level as a result of it was very a lot if she will’t have surgical procedure, then there is not something they will do. Not one of the medicine have been working. Every time she had a seizure – particularly the lengthy ones – it was damaging her mind. I knew she couldn’t go on like that.”
Lastly, in January, six months after that first seizure, the medics agreed she ought to go on the ready checklist for the operation. However they have been warned it may take as much as a yr. All of the whereas, the seizures continued at tempo, forcing the little five-year-old to be admitted to hospital virtually each week.
“I felt, and at this level she was having 50 seizures a day, it was getting worse,” stated her mum. “She was being admitted each seven to eight days. By the final week of February she was in hospital once more and so they transferred her, as an emergency, as much as Nice Ormond Avenue as nothing, at this level, was working. We acquired there on a Friday and some days later she had surgical procedure.”
For seven nerve-wracking hours, her dad and mom waited as surgeons eliminated virtually 1 / 4 of her mind. Not solely did they take away the left temporal lobe, but additionally the hippocampus, a part of the mind which helps with reminiscence.
Hayley defined: “After they went in, the surgeon advised us there was a lot scarring they needed to take away greater than what they’d anticipated. In order that they eliminated all the pieces that was scarred that appeared to be secure. A whole lot of her mind was eliminated. What they found was that she had temporal lobe cirrhosis and that was what was responsible for the epileptic seizures.“
However there was one remaining twist. Shortly after she awoke from surgical procedure she suffered two additional seizures. They might, nonetheless, be her final. Docs had anticipated it because of such an operation and, two years later, she’s not had one since.
Hayley stated: “They do not present you the scan image till a yr has handed – and thank God they do not. As a result of if you see it, there’s simply a lot white mass – the place they’d resected [cut out] all the pieces. If I might identified that, I might have been extra fearful than I used to be.”
It took a yr for Indy to completely recuperate. Her steadiness and short-term reminiscence have been impacted within the months which adopted – whereas it took a yr to wean her off the highly effective medicine she had been on in an effort to deal with the seizures earlier than the operation.
She missed a complete yr’s education as a consequence. At present, nonetheless, Indy, now seven, has made a full restoration.
Hayley stated: “The surgical procedure in itself was a miracle, nevertheless it utterly labored; it healed her. She had 1000’s of seizures earlier than the surgical procedure and it is a miracle that did not trigger any long-lasting mind injury.
“The guide defined when the mind is in a lot trauma – because it was in Indy on its left aspect – it begins to rewire all the pieces that aspect of the mind does to the right-hand aspect., which can clarify why she emerged so effectively.
“Our worry was her character – whether or not it will alter who she is. But it surely hasn’t in any respect. After she’d healed, it was like watching her be reborn. She was simply improbable and laughing once more.
“Two years on, all the pieces is nice. Now she solely must be checked up each six months. Everybody is admittedly pleased together with her. She is simply probably the most great little one – stunning inside and outside.”
Hayley is now attempting to assist different youngsters and oldsters in an identical place with a brand new enterprise, MyRealFairies, promoting fairy companion kits. Coming in three completely different variations, all are designed to get younger youngsters off their screens and get artistic. Inside is the gear to make a fairy dwelling, a particular fairy ‘potion’ and, in fact, an envelope ‘for grownup eyes solely’ which comprises particular scrolls for fogeys to ‘channel their internal fairy’ and depart messages on.
The thought was impressed by the magical messages she used to consolation her daughter in hospital. For each bought, a care fairy field can be donated to a toddler within the Evelina London Youngsters’s Hospital or Nice Ormond Avenue Hospital – who performed such a key position in Indy’s restoration. Every package is made by Hayley and can be on sale through her web site.
