HEARTBROKEN's single mother has told her "two-year-old" daughter has been stolen after "a little bit" – after developing ONE dementia.
Vicky Cunningham's daughter Mirryn was born at 31 weeks and two days with a weight of 3lb 2oz.
But despite her rocky instability she saw her stay in a two-month hospital in a special care unit where she was treated for the sickness – she succeeded and became a healthy child.
Vicky, 34, from West Lothian, Scotland, said to Fabulous Digital: "It was getting normal as usual. She could laugh and laugh. She was pretty beautiful and had a great sense of excitement. T 'Development.'
But, at about 10 months, Vicky realized that something was wrong.
She said: “She didn't catch up properly. She seemed to be generally weakening and I knew that something was definitely right. ”
Vicky took health visitors to where she was sent to St John's Hospital.
In fact, for Vicky, the start of a path leading to a massive survey in January this year – CLN1 Batten disease, or known as childhood dementia.
It is a very rare disease where cells cannot recover.
Children lose little of their skills and learned how the brain breaks.
Vicky said: “It's heartbreak. It should start in the nursery but I know it will never happen. There are so many that she will be missing. ”
Vicky said that she understood something wrong with a young girl from an early age.
“As a very tiny child, she usually tried to keep my hand when she grew older,” she said.
“She didn't want to catch things – it was like she was losing her motor skills. ”
About a year old, following her mother's requests, Mirryn was asked to have an MRI of her brain – a deep scan of the wine.
It showed that there was a slight decline in my brain in the brain, the fatty matter that was created in the central nervous system, but that's not enough to worry the doctors.
She was sent home by a judgment of sweets, brought back by myelin.
Vicky said: “She got worse and worse. In November last year she would knock about him that a child loved him.
“A few weeks later she couldn't physically do it. Her boys started going … it was going down at a scary level. ”
Another MRI study was carried out and it showed considerable changes – almost half of which had been eaten. “Even a child has been aware of her brain changes,” she added.
Her brother Alasdair, who is eight, could have a look at the scan. They realized he wasn't right.
It should start in the nursery but I know it will never happen
She was diagnosed with Batten's illness and charged with a team of specialists including a number at Great Ormond Street Children's Hospital.
The rare illness means there is not much frightening about it – and at present it is not treated. And since then it has become worse during the day.
“It is devastating to look,” said Vicky, who is a girl's full-time carer. “It misses an eyeball, it can't interact, its vision is going and it can't swallow it.
“She is as different as the happy girl she was. I wouldn't think this was happening. It is not a traditional form of the disease – it is bad luck. ”
Vicky warned that his daughter could die one day. 'Perhaps it could be today, maybe it could be six weeks,' she said. “I don't think it will be here with Christmas unfortunately. "
She said: “As an elderly person with dementia she stops breathing.
“You're thinking of it as an illness of old people and it's usually unfortunately in this case.
“It takes my little girl apart. ”
And the situation's banning Mirryn's dream going to Disneyland so Vicky wants to get her Disney party back home.
She has launched a rich funding initiative at memundme.com to raise money for P Pod & # 39; – a city that helps protect her daughter's “flowery” situation.
She said: "She would like to go to Disneyland but can't fly, and instead we're organizing a Disney special party with costume characters and a Snow White cake here at home, later in the house. T everyone can be seen in the summer, so that everyone looks forward. "
Follow her: "But, this claim is really for raising money for a special seat called a P Pod that is posting up while it is lying there.
"Mirryn is totally open and can't support herself and she has to be there to find a suitable place to allow her to breathe and be easy."
“Batten disease children usually show symptoms earlier than age,” said the National Institute of Nuclear Diseases in the US.
“Common marks for most of these forms include loss of vision, seizure, delay and loss of previous skills, dementia, and unusual trends. ”
What was Batten Dise?
Death is a disorder of the nervous system that causes death and usually starts in childhood.
According to NINDS (National Institute of Neurological Disorders and Stroke), the disorder usually occurs in children aged 5 to 10, who may have been too good before; .
The first signs of the disease are the loss of muscle coordination and seizures. According to NINDS, this format goes on quickly and dies.
Batten infection is very rare: it happens in five or six births in Britain every year, and research has found that it is more common in Finland, Sweden, other parts of northern Europe and Canada. T .
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