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 by 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, told how Mirryn’s experience “will make end of life easier for other children” after she died on Sunday.
Vicky told BBC Scotland News website her last moments were peaceful.
She said: “She fought hard for a long time now.
“She was getting her favourite story and she was being cuddled by mum and she just put her head on me and she took her last breath, a big massive breath, and that was her.
“No pain any more. No medication. No drips. No oxygen. Just Mirryn.”
Mirryn passed away at the Children’s Hospice Association Scotland (CHAS) hospice in Kinross just before 06:00 on 23 June.
She had spent the last eight weeks of her life there, enjoying every minute with her family.
Vicky said: “We just made all the memories we could make. We took her out when we could and took her to Deep Sea World and we had tea parties and sleepovers.”
Lost motor skills
Born at 31 weeks weighing just over 3lbs, Mirryn was diagnosed with delayed myelination – a problem with the nervous system.
Further MRI tests revealed the full extent of her condition and she lost all motor skills.
She suffered a lot of pain but will leave behind a legacy for other children in her position.
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 pioneering the use of it in end-of-life care because of Mirryn.
“So she has changed things hopefully for another baby, another wee Batten baby or someone with a similar neurological problem. They won’t fit as much and she pushed them to the limit where they needed to look at other areas where they could help her.”
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.
Loved ones also launched a Facebook page named Team Miracle Mirryn, which was used to raise awareness of her condition.
Vicky paid tribute to her brave little girl and the influence she had on everyone around her.
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 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 strength I never knew I had.”
Vicky thanked the staff at Rachel House and vowed to keep raising money for CHAS. She believes the staff gave her more time with her daughter.
She said: “Without CHAS I dread to think what would have happened to me and Mirryn. We would have been sent home and Mirryn would have probably passed away months ago.”
Content provided by the BBC. Original piece can be found here https://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-48749008