Mum of tot aged 2 with dementia says ‘illness is taking her girl piece by piece’

A mum says her two-year-old girl who suffers from childhood dementia is being taken from her 'piece by piece'.

Vicky Cunningham's daughter Mirryn is not able to sit or stand on her own and has to lie down all the time after 'half her brain was eaten away by a chromosome disorder'.

Mirryn suffers from a very rare disease called CLN1 Battens, which affects the nervous system and causes worsening problems with vision, movement, and thinking ability.

She needs round-the-clock care, is fed through a button in her stomach and could die from the slightest infection, the Daily Record reports.

Vicky, 34, told The Sun : "Like an elderly person with dementia she will stop breathing in the end.

"You think of it as an old person’s illness and it usually is, but sadly not in this case.

"It’s taking my little girl, piece by piece."

Mirryn, who was born at 31 weeks and two days, was developing healthily until she reached 10 months old.

Her mum realised something was wrong when her girl stopped being able to grip things properly, and so she took her to see health visitors.

Mirryn was referred to hospital and, after MRI scans, by January this year she was diagnosed with CLN1 Batten disease, often known as childhood dementia.

Vicky from West Lothian, Scotland, said: "This disease has eaten away half of Mirren’s brain.

"Her brain is nearly half the size it used to be.

"Because of this rapid deterioration we don’t know how much longer we have with her, so for us we enjoy every moment."

Vicky said her daughter is losing her vision and she can't swallow or interact.

She told The Sun her girl could die any day, saying she doesn't think she'll make it until Christmas.

Vicky wanted to make the most of the time she has with the two-year-old by taking her to Disneyland Paris.

But as Mirryn is now too ill to fly, single mum Vicky is organising a Disney party with costume characters later in the summer.

To enjoy the party properly, loved ones have set up a  Go Fund Me  appeal to raise money for a special P Pod seat to protect her posture and allow her to breathe at ease.

Written in Mirryn's voice, the fundraising page says: "My name is Mirryn and I have a very rare disease called CLN1 Battens which there are very few of us who have this.

"Due to this I can not sit or stand on my own and have to lie down all the time.

"While spending time at Rachel House I have the use of a fantastic seat called a P Pod which I love and it protects my posture while I am lying in it.

"This seat cost lots of money and I would love if you could help me and my team raise the money to help to purchase this fantastic seat."

Batten disease is caused by the build up of fatty substances, called lipopigments, in the body’s tissues.

This build up kills off cells called neutrons in the brain, retina and central nervous system.

Only one in two children are diagnosed with infantile Batten disease each year in the UK.

Babies born with the condition often develop normally for the first few months of their life but towards the end of the first year, developmental progress starts to slow down and infants may have difficulty sleeping through the night and may become restless during the day. 

Early signs and symptoms of the disorder include the onset of vision problems, jerks or seizures and subtle personality and behavioural changes such as slow learning or regression, repetitive speech, clumsiness or stumbling.

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