A ‘miracle’ toddler has died in her mum’s arms after a battle with rare childhood dementia.
Two-year-old Mirryn Cunningham was left unable to sit or stand after developing Batten disease – a chromosome disorder which causes devastating damaged to the brain.
After her tragic death on Sunday, her mum Vicky told how the brave tot fought “hard for a long time”, but sadly took her last breath while listening to her favourite story.
Vicky, from Uphall, West Lothian, told BBC Scotland : “She was getting her favourite story and she was being cuddled by mum and she just put her head on me and took her last breath, a big massive breath and that was her.
No pain anymore, no medication, no drops, no oxygen. Just Mirryn.”
Mirryn passed away at Children’s Hospice Association Scotland (CHAS) hospice in Kinross, where she had spent the last eight weeks of her life.
Speaking about those final weeks, 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.”
Mirryn suffered from CLN1 Battens, which affects the nervous system and causes worsening problems with vision, movement, and thinking ability.
She needed round-the-clock care and was fed through a button in her stomach.
But, despite losing her daughter, Vicky said Mirryn’s experience “will make end of life easier for other children” in the future.
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.
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.