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A single mother HEARBROKEN recounted that her two-year-old daughter was "stealing" her "piece by piece" – after developing ONE's dementia.
Vicky Cunningham's daughter, Mirryn, was born at 31 weeks and 2 days, weighing a tiny 3lb 2oz.
Mirryn Cunningham
But – despite her stormy onset that forced her to stay in the hospital for two months in a special care unit where she was treated for jaundice – she thrived and became a healthy baby .
Vicky, 34, of West Lothian, Scotland, told Fabulous Digital: "She was developing normally, she was moaning and smiling, she was really adorable and her cheeky personality was growing."
But by 10 months, Vicky realized that something was wrong.
She said, "She was not good anymore. She seemed to weaken in general and I knew instinctively that something was wrong. "
Mirryn Cunningham
Vicky took her to health centers where she was transferred to St John's Hospital.
It was, for Vicky, the beginning of a journey that led to a terrible diagnosis in January of this year: CLN1 Batten disease, also known as infantile dementia.
It is an extremely rare disease where cells are unable to regenerate.
Children are gradually losing the skills they have acquired as a result of the disintegration of their brains.
Vicky said, "It's heartbreaking to see. She should start the nursery but I know that it will never happen. He misses so much.
Mirryn Cunningham
Vicky said she understood that something was wrong with her daughter at an early age.
"As a very small baby, she was normal, she never tried to hold my hand as I got older," she said.
"She did not want to catch things – it was like she was losing her motor skills."
At the age of one year, at the request of her mother, Mirryn was sent for an MRI of her brain – an in-depth badysis of the tissue.
There has been some decline in myelin in the brain, fat in the central nervous system, but not enough for doctors to be extremely worried.
Mirryn Cunningham
She was sent home with a diagnosis of myelination when the myelin sheath was removed.
Vicky said, "But she just got worse. In November of last year, she was swaying in her baby bouncer she loved very much.
"A few weeks later, she was physically unable to do it. Her babble started to go … she was declining at an alarming rate.
Another MRI was performed and showed significant changes – almost half of his brain was gnawed. "Even a child would have noticed how much his brain had changed," admitted Vicky.
"His brother Alexander, who is eight years old, could have glanced at the scan and realized it was wrong."
She should start the nursery but I know that it will never happen
Vicky Cunningham34
She was diagnosed with Batten's disease and was referred to a team of specialists, including a number at the Great Ormond Street Children's Hospital.
Due to the rarity of the disease, nothing is known about it – and there is currently no cure. And since then, it has gotten worse by the day.
"It's devastating to watch," said Vicky, the full-time babysitter of her daughter. "She has lost eye contact, can not interact, her vision is going away and she can not swallow.
"She is so different from the happy girl she was. I would never have imagined that it could happen. It's not a hereditary form of the disease, it's just bad luck. "
Vicky admitted that her daughter could die from one day to the next. "It could be today, tomorrow, in six weeks," she said. "I do not think she'll be here by Christmas with sadness."
Mirryn Cunningham
She added, "Like an elderly person with dementia, she will stop breathing at the end.
"You think it's an elderly person's illness and that's usually the case, but unfortunately not in this case.
"It takes my little girl, room by room."
The disease is preventing Mirryn's dream of going to Disneyland and Vicky is looking to host a Disney party at home.
She launched a crowdfunding campaign on gofundme.com to raise funds for a "P Pod" – a chair that helps protect her daughter's "floppy" posture.
She added, "She would like to go to Disneyland but can not fly, so we're having a special Disney party with costumed characters and a Snow White cake right here at home, later in the summer, for let everyone rejoice. "
Mirryn Cunningham
She continued, "However, this call is actually to raise funds for a special seat called P Pod that protects her posture while she is lying down.
"Mirryn is completely dislocated and unable to support herself and needs this chair to help her find a position that allows her to breathe and be comfortable."
"Children with Batten Disease usually have symptoms before the age of one," said the US National Institute of Neurological Disorders and Stroke.
"Symptoms common to most forms include vision loss, convulsions, delay, and potential loss of previously acquired skills, dementia, and abnormal movements."
What is Batten disease?
Batten's disease is a nervous system disorder that causes death and usually starts in childhood.
According to NINDS (National Institute of Neurological Disorders and Stroke), this disorder usually begins to appear in children aged 5 to 10 years, who may have already found themselves perfectly well.
The first signs of the disease are a loss of muscle coordination and convulsions. According to NINDS, this form progresses rapidly and ends with death.
The basic disease is very rare: it occurs in five or six births in the UK each year, while research has shown that it is more common in Finland, Sweden, other parts of the world. Northern Europe and Canada.
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