Toddler was given paracetamol by doctors but she was already fighting for her life and now faces race against time
Katie Hughes faces a a looming NHS deadline for £500,000 treatment
Sisters Katie and Mackenzie Hughes
A little girl who was told to take paracetamol for a simple fever is now fighting for her life after doctors discovered she has a rare and deadly disease. Three-year-old Katie Hughes was rushed to hospital after suffering a terrifying seizure.
Doctors blamed it on a high temperature and her parents Grant and Jessica Hughes were reportedly sent home with painkillers and told not to worry.
But the fits kept coming and after Katie endured her seventh seizure, her parents demanded answers.
On 14 July, with no family history to explain her symptoms, doctors ordered genetic tests that delivered crushing news. Katie has CLN2 Batten Disease – a cruel, terminal brain disorder that will slowly rob her of her ability to walk, talk and see.
While there is no cure for Batten Disease, a special enzyme therapy can help slow its relentless progress but the treatment costs a staggering £500,000 a year per patient – and has to be given directly into the brain every two weeks through a permanent device.
The NHS has a special deal in place for children who have already started treatment or who can start it before the end of 2025, according to the NICE website.
But new patients after that might not be able to get it on the NHS at all, because health bosses say there's not enough long-term evidence it works and the price is too high for the NHS budget.
Katie's parents are in a desperate race against time to try to get her onto the treatment before the deadline – or raise enough money to go private or even abroad if they have to.
Katie and her dad Grant Hughes
"As a mother you're always there for your children and I'm expected to just sit down and slowly watch her deteriorate and go," Jessica, 29, from Porth in Wales, said.
"It's just hard to see that because she's only three – she hasn't even lived her life yet. She's too young to understand what's happening to her."
Katie's symptoms first appeared in January this year. She had a brain scan in May that confirmed that she had epilepsy before she received her Batten diagnosis in July.
Doctors have warned that she may not live past the age of eight to 12, meaning her parents could lose their daughter before she even reaches secondary school. Her family want to make precious memories while she's still able to enjoy them.
Grant, said: "I'd never even heard of [the disease] before. "Jessica called me at work and told me to come home because the doctor wanted to give us the news together. I'm not a crying person but I was tearing up – we were in pieces.
"They told us what was going to happen in the future but they didn't straight away say she was going to die. I felt like they were skirting around it.
"I asked them outright what her life expectancy was and they told me it would be early childhood. It's devastating. It's hard to wrap your head around because she's normal – she's running around fine but all her skills will slowly go."
Three-year-old Katie Hughes was rushed to hospital after suffering a terrifying seizure.
Despite their heartbreak, the brave parents are determined to stay strong for Katie and her big sister MacKenzie, age seven.
They hope to take Katie on dream trips so she can experience the magic before it's too late.
Jessica said: "Everything is on a timer now. We want to take her to theme parks and Disney World while she can still enjoy it.
"Even that's not simple – because she's epileptic we have to pay £100 for special glasses so she can cope with the flashing lights.
"We put on a brave face every day but secretly it's destroying. We have to be there for her – and for MacKenzie too."
Katie's loved ones have launched a fundraiser to help cover the sky-high treatment costs, specialist equipment and special days out.
Grant added: "We just want Katie to have the best days we can possibly give her. She deserves to smile, to laugh and to feel loved every single day we have left."
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You can donate to Katie's fundraiser here.
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