Mum told little Katie, 3, is dying from DEMENTIA – after doctors sent her away with paracetamol for ‘simple fever'
MUM'S AGONY Mum told little Katie, 3, is dying from DEMENTIA – after doctors sent her away with paracetamol for 'simple fever'
LITTLE Katie Hughes was given paracetamol for a "fever" - but she's now fighting for her life after being diagnosed with a rare, dementia-like disease.
The three-year-old was rushed to hospital earlier this year after suffering a terrifying seizure.
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12
Katie began experiencing seizures in January this year
Credit: Jam Press/Grant Hughes
12
Her parents say they were sent home with paracetamol
Credit: Jam Press/Grant Hughes
12
But Katie kept getting seizures and she was diagnosed with a deadly brain disease in July
Credit: Jam Press/Grant Hughes
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, doctors ordered genetic tests that delivered crushing news.
Katie has CLN2 Batten disease – a cruel, terminal brain disorder, frequently referred to as juvenile dementia, that will slowly rob her of her ability to walk, talk and see.
Advertisement
Jessica, 29, from Porth in Wales, said: '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.
'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.
Advertisement
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.
Legionnaire's disease outbreak kills at least two and sickens dozens more after spreading at alarming rate across NYC
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.
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'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.
12
Katie as a baby
Credit: Jam Press/Grant Hughes
12
Katie with her older sister Mackenzie
Credit: Jam Press/Grant Hughes
Advertisement
12
Doctors said the tot would gradually lose the ability to walk, talk, see and remember
Credit: Jam Press/Grant Hughes
'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.'
Advertisement
Despite their heartbreak, the brave parents are determined to stay strong for Katie and her big sister MacKenzie, age seven.
We put on a brave face every day but secretly it's destroying us. We have to be there for her
Jessica Hughes
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.
Advertisement
'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 us. We have to be there for her – and for MacKenzie too.'
12
Katie likely won't make it past early childhood
Credit: Jam Press/Grant Hughes
12
Katie's parents are determined to stay strong for her and make precious memories
Credit: Jam Press/Grant Hughes
Advertisement
12
Grant feeding Katie as a baby
Credit: Jam Press/Grant Hughes
Gift of 'best days'
CLN2 disease is a rare degenerative genetic disorder that affects between 30 and 50 children in the UK, Great Ormond Street Hospital (GOSH) says.
It's caused by a change in a gene responsible for making a specific enzyme in the nervous system.
It first causes seizures, then gradual decline in a child's ability to walk, speak and see, alongside progressive dementia.
Advertisement
While there is no cure for Batten Disease, a special enzyme therapy could help slow its relentless progress.
But the treatment costs a staggering £500,000 a year per patient and needs to be administered directly in the brain every two weeks, through a permanently implanted device called a port.
What is Batten disease?
Batten disease is a group of genetic conditions that cause cells to collect waste instead of getting rid of it.
It affects the structure and function of cells and ultimately causes their death.
The disease leads to seizures, vision loss and problems with thinking and movement.
Symptoms get worse over time and children diagnosed with it tend to die early.
There are 14 known types of Batten disease grouped into categories based on the age when symptoms begin.
The first signs and symptoms of Batten disease include: Vision loss
Personality and behavioural changes
Clumsiness and issues with coordination, balance and movement
Seizures
Other symptoms may include: Difficulty with thinking and reasoning
Speech and language problems, such speech delay, stuttering and repeating words or phrases
Tremors, tics, muscle spasms and twitches
Memory loss (dementia)
Hallucinations and episodes of psychosis
Sleep disturbances
Muscle tightness
Arm and leg weakness
Heart problems, such as arrhythmia (in teens and young adults)
Source: Cleveland Clinic
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 National Institute for Health and Care Excellence (NICE).
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.
Advertisement
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'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.'
Advertisement
You can visit the family's fundraiser for Katie here.
12
Katie's parents are trying to raise money for a new treatment
Credit: Jam Press/Grant Hughes
12
'She deserves to smile, to laugh and to feel loved every single day we have left,' Grant said
Credit: Jam Press/Grant Hughes
12
'Everything is on a timer now,' Jessica said
Credit: Jam Press/Grant Hughes
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Mum told little Katie, 3, is dying from DEMENTIA – after doctors sent her away with paracetamol for ‘simple fever'
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But the fits kept coming and, after Katie endured her seventh seizure, her parents demanded answers. On 14 July, doctors ordered genetic tests that delivered crushing news. Katie has CLN2 Batten disease – a cruel, terminal brain disorder, frequently referred to as juvenile dementia, that will slowly rob her of her ability to walk, talk and see. Advertisement Jessica, 29, from Porth in Wales, said: '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. '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. Advertisement 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. Legionnaire's disease outbreak kills at least two and sickens dozens more after spreading at alarming rate across NYC 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. Advertisement '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. 12 Katie as a baby Credit: Jam Press/Grant Hughes 12 Katie with her older sister Mackenzie Credit: Jam Press/Grant Hughes Advertisement 12 Doctors said the tot would gradually lose the ability to walk, talk, see and remember Credit: Jam Press/Grant Hughes '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.' Advertisement Despite their heartbreak, the brave parents are determined to stay strong for Katie and her big sister MacKenzie, age seven. We put on a brave face every day but secretly it's destroying us. We have to be there for her Jessica Hughes 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. Advertisement '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 us. We have to be there for her – and for MacKenzie too.' 12 Katie likely won't make it past early childhood Credit: Jam Press/Grant Hughes 12 Katie's parents are determined to stay strong for her and make precious memories Credit: Jam Press/Grant Hughes Advertisement 12 Grant feeding Katie as a baby Credit: Jam Press/Grant Hughes Gift of 'best days' CLN2 disease is a rare degenerative genetic disorder that affects between 30 and 50 children in the UK, Great Ormond Street Hospital (GOSH) says. It's caused by a change in a gene responsible for making a specific enzyme in the nervous system. It first causes seizures, then gradual decline in a child's ability to walk, speak and see, alongside progressive dementia. Advertisement While there is no cure for Batten Disease, a special enzyme therapy could help slow its relentless progress. But the treatment costs a staggering £500,000 a year per patient and needs to be administered directly in the brain every two weeks, through a permanently implanted device called a port. What is Batten disease? Batten disease is a group of genetic conditions that cause cells to collect waste instead of getting rid of it. It affects the structure and function of cells and ultimately causes their death. The disease leads to seizures, vision loss and problems with thinking and movement. Symptoms get worse over time and children diagnosed with it tend to die early. There are 14 known types of Batten disease grouped into categories based on the age when symptoms begin. The first signs and symptoms of Batten disease include: Vision loss Personality and behavioural changes Clumsiness and issues with coordination, balance and movement Seizures Other symptoms may include: Difficulty with thinking and reasoning Speech and language problems, such speech delay, stuttering and repeating words or phrases Tremors, tics, muscle spasms and twitches Memory loss (dementia) Hallucinations and episodes of psychosis Sleep disturbances Muscle tightness Arm and leg weakness Heart problems, such as arrhythmia (in teens and young adults) Source: Cleveland Clinic 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 National Institute for Health and Care Excellence (NICE). 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. Advertisement 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'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.' Advertisement You can visit the family's fundraiser for Katie here. 12 Katie's parents are trying to raise money for a new treatment Credit: Jam Press/Grant Hughes 12 'She deserves to smile, to laugh and to feel loved every single day we have left,' Grant said Credit: Jam Press/Grant Hughes 12 'Everything is on a timer now,' Jessica said Credit: Jam Press/Grant Hughes
