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'Miracle Mirryn' loses fight with childhood dementia

 Mirryn Cunningham

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Mirryn's family were determined to make their short time together as happy as possible

A two-year-old girl from West Lothian, who battled a rare form of childhood dementia, has died.

Mirryn Cunningham developed Batten disease, a chromosome disorder which left her unable to eat at herself, walk or see properly.

It occurs in five or six births every year in the UK and there is no cure.

Her mother Vicky, from Uphall, duty how Mirryn's experience "will make of life easier for other children" after she

She said: "She fought hard for a long time now.

" She was getting her favorite story and she was being cuddled. by mum and she just got her head on me and she took her last breath, a big massive breath, and that was here.

No Miracle. No drips. No oxygen. Just Mirryn.

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Media caption Vicky Cunningham: "In my head, I am going, does she remember who i am? but she definitely knows mummy's voice ̵
1; definitely. "

Mirryn passed away at the Children's Hospice Association Scotland (CHAS) hospice in Kinross just before 06:00 on June 23.

She had spent the last eight weeks of her life, enjoying every minute with her family.

Vicky said: "We just made the memories we could make. we had tea parties and sleepovers. "

Lost motor skills

Born at 31 weeks weighing just about 3lbs, Mirryn was diagnosed with delayed myelination – a problem with the nervous system.

Further MRI tests revealed the full extent She is suffering from pain but will lea

Vicky explained: "CHAS said to me Mirryn pushed all medical boundaries. They used a drug, called Keppra, which they have never used before and they are now the use of it in end-of-life care because of Mirryn.

"So she has changed things hopefully for another baby, another wee Batting baby or someone with a similar neurological problem, they won't fit much and she pushed them to the limit where they needed to look at other areas where they could help here. "Image copyright
Vicky Cunningham [19659025] Image caption

Mirryn Cunningham was about six months old when she started to lose motor functions

The condition Mirryn had is a rare disorder of the nervous system which typically begins in childhood.

According to the National Institute of Neurological Disorders and Stroke (NINDS), the first signs of Batten disease are impaired muscle co-ordination and seizures

A full support network was put in place for Mirryn and her family said they would make the rest of her life as memorable as possible – as there was "nothing they could do" to slow down her deterioration.

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Vicky Cunningham

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"Miracle" Mirryn died on Sunday at Rachel House in Kinross

Loved ones also launched a Facebook page named Team Miracle Mirryn, which was used to raise awareness or reconditioning.

Vicky paid tribute to her little girl and the influence she had on everyone around here.

She said: "Mirryn was far too powerful for this world. She was two-and-a-half and she educated so many people in one of the world's rarest neurological disorders.

" Look what she has done for end of life care. Imagine what she would have done if she got to 20. She was far too powerful. At two years old she united the world – the little girl with dementia. "

'Strength I never knew I had'

Vicky added:" I know a lot of hearts broke – not just mine – on Sunday night.

"She was my Miracle Mirryn. She lived up to the name of miracle because she did things that were medically impossible.

" She was my greatest teacher. She taught me things I never knew and she showed me I had never known. "Vicky thanked the staff at Rachel House and kept raising money for CHAS. daughter

She said: "Without CHAS I dread to think what would have happened to me and Mirryn. We had a lot of home and Mirryn would have probably passed away months ago. "

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