A mum and dad have revealed that a simple stuffy nose, cough or warm Spring day could “kill” their little girl instantly – but costly surgery might be the cure.
It was a sunny and hot day when Rebecca Thornton’s and Mathew Braddock’s world turned upside down.
Their tot, Amelia, who was only nine months old at the time, was sitting in her car seat when she suddenly suffered a life-altering seizure.
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The pair, aged 27 and 29, flew into a state of panic as they worried their little girl would stop breathing.
And despite multiple tests, it’s still unclear the cause; though it’s suspected to be due to her enlarged tonsils.
Now, her life hangs in the balance as there’s a long waiting list for removals and so their only option is to go private – at an eye-watering £4,500 cost.
“Any time she’s a little bit off or has a slight temperature I go into panic mode,” the stay-at-home mum, from Huddersfield, told Need To Know.
“I think I may need some sort of therapy to overcome the trauma her seizures have caused me.
“I’ve lost pay due to having to be off so I can look after her.
“And socially, no one comes to the house if they are slightly ill out of the fear it’ll be passed onto her.
“We miss out on family events, too.
“I feel a mix of sadness, anger, anxiety and total overwhelm.”
Mathew and Rebecca, who also share Isabella, one, says there were no symptoms prior to the initial seizure in May 2023.
As the ambulance wait was over two hours, they feared the worst, until an off-duty doctor made themselves known and came to help.
Mathew said: “I was so grateful for them.
“At hospital, they found signs of enterovirus, but said it was due to the seizure and sent us home.
“Since then, she’s had four more seizures.
“Her most frightening one took her longer to come around than normal – around one minute extra – and the seizures had become more frequent.
“Now, instead of lots of months in between, it’s only around two months.”
Amelia suffers from enlarged tonsils and adenoids – patches of lymphatic tissue behind the nose – as well as frequent bouts of sickness, tonsillitis and colds.
The three-year-old often sweats during her sleep, even in cold temperatures, and never appears to be fully well-rested.
Her school has noted that the toddler is “up and down” most days, though is always irritable due to the lack of sleep.
It’s suspected that her symptoms, especially the enlarged tonsils, are the root cause as high fever and infections lead to febrile seizures.
The parents looked to get Amelia referred to have them removed, though due to long waiting lists, this is no longer a viable option.
Now, they’ve had a consultation with a leading surgeon and in two weeks, they’ll shell out £4,500 to have them taken away for good.
It’s left them worrying about finances, but they’re thankful their daughter’s life should hopefully no longer be on the line.
Rebecca added: “As the seizures keep getting worse, we fear she may die from them or have lasting damage.
“I also worry she will miss out on so many child activities down to simply going in the back garden when it’s cold due to fears of overheating.
“I hate whenever we’re sick, as we’re so scared it’ll get passed onto her, too.
“Whenever she’s sleeping, we lie on the floor next to her in case she will seize in her sleep and die.
“[With summer coming up] we fear that she will naturally get too hot while playing and have a seizure.
“We tend to find ourselves not leaving the house much as to keep her in an air-conditioned room.
“But if we do [venture out], we make sure to have lots of water and light clothes.
“I hope that this removal will stop the seizures and help her sleep better, meaning she’s not ill as often and can start to live life as a normal child again.
“Try to stay calm and remember your recovery positions if your child is going through something similar.
“There’s a lot of Facebook groups that have helped a lot.
“And talking with friends and family helps massively.”
