A MUM who thought her little girl “would be reading by one” is now watching her slowly fade away after she was diagnosed with a devastating childhood disease.
Stacey Sprason, 41, was shocked to learn her Teraysa, aged three, only has years left and there is no cure for her condition.
Stacey Sprason, 41, thought her little girl would be ‘reading by one’ because she seemed so ‘special’Credit: Jam Press
But Teraysa was diagnosed with a condition that will likely see her die before the age of 10Credit: Jam Press
The three-year-old is ‘deteriorating quite quickly’ as the devastating disease takes holdCredit: Jam Press
It’s estimated that little Teraysa won’t live past the age of 10, and there’s a high risk she will lose sight in both eyes, along with the ability to walk, talk, eat and swallow.
The stay-at-home mum, from Christchurch, , told : “It’s gut-wrenching and heartbreaking.
“We are utterly devastated and completely broken as a family.
“I don’t wish this on anyone – it feels like I’ve done something so bad that my child has to be taken away from me.
“I know people say they only give the strongest of people the hardest challenges, but I don’t want a challenge, I want all my children.
“At the moment Teraysa is deteriorating quite quickly. She is very unsteady on her feet and she has already started to go blind in both eyes.
“Her speech isn’t good – she used to say sentences, but now she only says single words.
“She will point a lot more now and you can tell that she can’t remember what words she used to know, which is heartbreaking.
“She gets upset when she can’t say what she wants.”
In the UK, only 100 to 150 children and young adults are thought to have Teraysa’s diagnosis,
The cruelly strikes after a child has started reaching early milestones, like crawling and talking, according to the Batten Disease Family Association.
And Stacey had expected her daughter to be bright.
She says that she struggled to bond with Teraysa at first, having found out she was pregnant at a difficult time, when her son, Abel, was 10 months old and in ICU.
But once they started to bond, it wasn’t long before she saw something special in her child.
Stacey, who has seven other children with husband Michael, 42, says: “I always knew there was something different about her when she was born.
“Me, my friend and other members of my family knew she was different but could not put our finger on what it was.
“I kept saying it to my health visitor that it was either she was going to be a genius, or she was .
I went outside to check and Teraysa was in the paddling pool, face down in the water, after having a seizure
Stacey
“She just showed different signs to what any of my other children did, continuously jumping, clapping hands and no awareness of her surroundings.
“I honestly thought she was going to be reading by one-years-old.
“Never did I think it was something like this.”
Violent seizures
Teraysa began having seizures just before the age of three, in December 2024.
Stacey was left “worried and shocked” after the initial seizure and was told to record them.
They became more frequent, and then violent – she’d become blue in the face and unresponsive for up to 20 minutes at a time.
She was diagnosed with in March 2025, and shortly after her behaviour changed, too.
Stacey says: “We were lucky if she slept for one hour.
Stacey didn’t bond with Teraysa until she was one, having had a traumatic experience with another child born not long beforeCredit: Jam Press
‘She showed different signs to what any of my other children did,’ said mum-of-seven StaceyCredit: Jam Press
“When they found that both sides of her brain were affected, she began having which got so bad, she stopped breathing multiple times.
“As her seizures worsened, she started going blue around the mouth.
“One of the scariest times was during summer. It was a normal day, until one of our kids ran into the house screaming.
“I went outside to check and Teraysa was in the paddling pool, face down in the water, after having a seizure.
“She was pulled out and put into the recovery position but was completely blue in the face.
“I feared the worst.
“Luckily, she began breathing again as the ambulance arrived; but it was terrifying.”
‘I don’t think it’s properly sunk in’
Doctors pushed for genetic testing of Stacey and Michael to be rushed through faster.
That’s when the parents were told Teraysa had Batten disease , a disorder that causes waste material to build up in brain cells, leading to progressive neurodegeneration and ultimately cell death.
The early symptoms can be seizures, vision loss and coordination symptoms.
This leads to a decline in thinking skills, language and memory loss (), as well as spasms, weakness and rigidity of muscles and heart .
“I thought it was just a case of epilepsy, as that runs in the family,” says Stacey.
“But after learning it was [a fault in] mine and my partner’s genetics, it was a shock.
“I don’t think it’s properly sunk in for both of us yet.”
Stacey fears that her little girl won’t respond to treatment and their time together will be cut even shorter than predicted.
She said: “It’s hard seeing her deteriorating bit-by-bit.
“Out of all my siblings, I am the most maternal, and I always knew from a young teen I wanted to be a mum.
“It’s not fair that I have to lose one [of my kids].”
Teraysa was diagnosed with epilepsy in March 2024, after she had been having seizures that would last up to 20 minutesCredit: Jam Press
Eventually it was discovered Teraysa had a rare genetic conditionCredit: Jam Press
Teraysa will slowly forget how to do everything she has learned so far, such as walk and talkCredit: Jam Press
Teraysa goes to Little Explorers nursery, which Stacey says have “gone above and beyond” to support her.
But she has a lot of treatment and surgery ahead to try and give her the best life possible.
Every fortnight, she is taken to Great Ormond Street hospital for four-hour invasive treatment to pump healthy enzymes that her body doesn’t produce naturally into the fluid around her brain.
This followed brain surgery to fit a reservoir to help prevent fluid build-up in the brain.
It’s hoped this will slow down the disease.
‘We won’t have long left’
The treatment costs an eye-watering £500,000 per year and is funded as part of the clinical trial.
Without treatment, though, it’s likely she wouldn’t live past four years old and so the family have deemed the pricey treatment “crucial”.
Stacey says: “The toll on us financially getting to is difficult, as it’s not cheap.
“It’s £130 for a night stay [her treatment is at 8am].
“I’m trying to keep things as normal as possible for as long as I can.
“Our dream is to take her to before we have to say goodbye.”
Now, the family are hoping to raise funds to take Teraysa on the once-in-a-lifetime trip, along with aiding the costs of transportation.
So far, almost £5,000 has been donated of their £11,000 target.
Stacey says: “We are scared that she will deteriorate quickly and we won’t have long with her at all.
“All we can do is cling onto hope that there is someone, somewhere in the world, that can come up with a cure in her lifetime.
“I can’t reassure other parents going through a similar situation, as everybody’s journey is different.
“It’s a horrible thing to have to go through, but just hold onto hope, because that’s all we have.”
What is Batten disease?
Batten disease is a cruel, genetic disorder which strips away the ability to do every day tasks, primarily affecting children.
Batten disease is the common name for a group of rare, fatal, inherited neurodegenerative disorders, collectively known as Neuronal Ceroid Lipofuscinoses (NCLs). It primarily affects the nervous system.
Cause
It is caused by gene mutations in one of over a dozen CLN genes. There are 13 known types of Batten disease, classified based on the affected gene, according to the Batten Disease Family Association .
When these proteins are defective, a fatty, toxic waste material called ceroid lipofuscin accumulates in the lysosomes of cells throughout the body, most critically in the brain and eyes.
This buildup leads to progressive cell damage and death (neurodegeneration).
Most forms are inherited in an autosomal recessive pattern, meaning an affected child inherits a defective gene copy from each unaffected carrier parent.
Symptoms
Symptoms can begin in infancy, childhood, or early teenage years. They vary but are always progressive and devastating. Initial signs often appear in childhood after a period of normal development.
Common symptoms include:
- Progressive vision loss leading to blindness.
- Seizures that are often difficult to control.
- Cognitive decline (dementia, learning difficulties).
- Motor skill loss (clumsiness, ataxia, inability to walk, talk, or swallow).
- Behavioural and personality changes.
As the disease progresses, affected children become blind, bedridden, and unable to communicate.
Currently, there is no cure for most forms of Batten disease. Death often occurs in the late teens or twenties, depending on the type.
Treatment focuses on managing symptoms.
Prevalence
The estimated global incidence for all forms of NCL is about 1 in 100,000 live births.
According to the Boston Children’s Hospital, there are roughly 14,000 children known to have Batten disease.
In the UK, Batten disease affects between 100 and 150 children and young adults.
