The day started like any other.
Ceeariah Madden woke up one morning in November 2025 and headed to her four-year-old daughter's room to get her up for the day. But something seemed off.
Her normally bubbly child appeared to be eerily 'out of it.' So Madden decided to take her to the hospital.
What came next were grueling months of tests that yielded very few answers. But Madden, 31, from Poinciana, Florida, was eventually told that her daughter, Azylah, had an incurable and fatal disorder known as CLN6 Batten disease.
'That's when our world stopped,' the distraught mother told the Daily Mail. 'Since that moment, life has never been the same.'
Looking back, Madden admitted that her daughter had one symptom she had overlooked.
The youngster would sometimes have small 'jerks' in her sleep.
'They didn't seem like much at the time, just something subtle that only happened while she was asleep,' she explained. 'It didn't seem like a big deal.'
Ceeariah Madden's four-year-old daughter, Azylah, was diagnosed with an incurable and fatal disorder known as CLN6 Batten disease.
Madden noticed one morning in November 2025 that her normally bubbly toddler appeared to be eerily 'out of it.' So she decided to take her to the hospital.
During that first ER visit, Madden was told her daughter had suffered from a tonic-clonic seizure - a type of seizure featuring a stiffening phase followed by rhythmic jerking - and was referred to a children's hospital for further testing.
It took two months for them to finally get the diagnosis of CLN6 Batten disease, which Madden described as the 'most devastating moment of her life.'
'Getting the diagnosis felt like having the ground ripped out from under us,' she shared.
Per MedlinePlus.gov, the condition primarily affects the nervous system and usually causes recurrent seizures, difficulty coordinating movements, muscle twitches, impaired speech and vision loss.
Patients lose previously acquired skills and over time they cannot walk, stand or sit without assistance.
It is caused by genetic mutations that impair the body's ability to break down cellular waste, and it is estimated that Batten disease affects two to four births per 100,000 in the US.
For Madden, her daughter was given a life expectancy of eight to 12 years.
'To say the least, I am devastated,' she told the Daily Mail. 'There is no cure, and eventually she will lose all of her functions and pass away.'
Looking back, Madden said her daughter had one symptom that she had overlooked: the youngster would have small 'jerks' in her sleep sometimes.
It took two months for them to finally get the diagnosis of CLN6 Batten disease, which Madden described as the 'most devastating moment of her life.'
'This disease is rare, progressive and fatal... My daughter is now having seizures every single day, and I am watching her slowly lose the abilities she once had.
'As a parent, there is nothing more painful than knowing your child is slipping away and there is nothing approved to save them.
'Every day waking up knowing we are one day closer to the inevitable... There are no words that can truly describe that kind of pain.'
In addition to her seizures, Madden said her daughter has already developed problems with walking - she 'falls a lot and is very unsteady on her feet.'
'Unfortunately, things that once came naturally to her are becoming harder,' Madden explained.
'She's only four, so she doesn't understand what's going on with her body.
'She's not the same neurologically. There are moments where she seems distant, like she's slipping away piece by piece.
'CLN6 is a progressive disease, which means it doesn't wait. It keeps taking.'
Madden said she is fighting to get access to a treatment that could slow down the progression of the disease while 'holding onto every moment they still have together.'
The medication, called miglustat, is in 'early clinical testing' for CLN6 Batten disease. A recent study found that 'miglustat-treated patients had a slower rate of progression in physical impairment than is typically seen in untreated patients with juvenile Batten disease,' per Batten Disease News.
According to the publication, miglustat inhibits the production of the fatty molecules that accumulate in the bodies of CLN6 Batten disease patients due to the genetic mutation, and ultimately 'slows disease regression.'
'It's not a cure,' Madden said, 'but for families like ours, even slowing things down means everything.'
Her daughter now deals with daily seizures and has already developed problems with walking - she 'falls a lot and is very unsteady on her feet'
Madden said she is fighting to get access to a treatment that could slow down the progression of the disease while 'holding onto every moment they still have together'
She hopes by sharing their story it will help other families going through something similar feel less alone
'It could mean more time with her, more memories, more moments where she can still be herself. Right now, we're fighting to get access to that treatment.'
Madden revealed that her insurance company had denied covering the treatment.
Without insurance it costs $8,690 for 90 pills, each 100mg, according to Drugs.com. She has now turned to GoFundMe to try raising money to cover the costs.
She hopes by sharing their story, it will help other families going through something similar feel less alone.
'I am sharing her story because children like my daughter deserve to be seen, to be heard and to have a chance,' she concluded.
'This isn't just our story; it's the reality for so many rare disease families. And the hardest part is how little awareness there is.
'We're just trying to give our daughter every possible chance and make sure her story is heard.'
Madden previously faced devastation when her younger son Delswan Madden III, two, was diagnosed with Congenital Hyperinsulinism (CHI).
The rare genetic disorder causes excessive insulin secretion in the body and causes frequent, severe low blood sugar.
The toddler requires 'continuous 24/7 feeding through a feeding tube to keep his blood sugar stable.'