A mother has revealed the heartache of looking at her two-year-old ‘child dementia’ death.
Vicky Cunningham, 34, from West Lothian, Scotland, said her baby, Mirryn, was happy and healthy despite being born prematurely.
But when she was 10 months old, Mrs. Cunningham instinctively knew something was wrong when Mirryn stopped trying to keep her hand or her rock in her bouncer.
Examined by doctors, Cunningham was shocked when she was told that her daughter’s brain was dying.
At the age of one, Mirryn was diagnosed with the rare Batten disease – also called childhood dementia – which is incurable.
The specific type of disorder that she has, CLN1, is only registered in approximately 200 people, according to the National Institutes of Health of the US government.
Vicky Cunningham, 34, from West Lothian, Scotland, has told about her heartbreak while dying her two-year-old daughter, Mirryn, from “child dementia”
Mrs. Cunningham said her baby was a happy and healthy baby, despite being born prematurely
Mrs. Cunningham told me The sun: “As an elderly person with dementia, she will eventually stop breathing. It takes my little girl, piece by piece.
“It is heartbreaking to see. She should start with the nursery, but I know it will never happen. There is so much she will miss.
“She is so different from the happy girl she used to be. I never thought this would happen. ”
Mirryn was born after 31 weeks and two days, weighing 3lb 2oz, and spent two months in a special care unit that was treated for jaundice – a sign of liver problems.
But once she got home, she developed normally and Cunningham will always retain memories of her daughter’s former brutal personality, gurgles, and babbles.
When Cunningham was 10 months old, she noticed that she was no longer trying to grab things – such as her toy or mother’s hand – and her muscles seemed to be weaker.
Mirryn was referred to St. John’s Hospital in Livingston, where she had an MRI that showed some deterioration of myelin in the brain – a fatty substance that protects the nerves.
But doctors were not that concerned at the time.
According to Mrs. Cunningham, however, Mirryn’s behavior deteriorated at an alarming rate.
She no longer rocked her baby bouncer and she stopped making babbling noises.
Mrs. Cunningham, pictured with Mirryns, said: “As an elderly person with dementia, she will eventually stop breathing. It takes my little girl, piece by piece ‘
When she was 10 months old, Mrs. Cunningham instinctively knew something was wrong when Mirryn stopped trying to keep her hand or rock in her bouncer
Mrs. Cunningham is now a full-time caretaker for Mirryn, pictured at home in her bed with medicine around her. Mirryns was diagnosed with Batten disease when she was one year old, causing her developmental skills to decline and brain cells to die
Mrs. Cunningham insisted that another MRI be performed.
It showed drastic changes in her brain compared to the previous results, which she said were clearly visible in the images, even for her other child, Alexander, eight.
WHAT IS BATTEN DISEASE?
Slat disease, also known as neuronal ceroid lipofuscinosis, is a rare genetic hereditary disease.
It is caused by waste accumulation in the cells that causes neurodegnerative effects, including:
- Epileptic attacks
- Personality changes
- Loss of motor skills and the ability to walk, talk and communicate
Because it is a rare disease, it is often difficult to diagnose and not tested at birth.
There are 14,000 children worldwide who are diagnosed with the condition.
There is currently no known cure or treatment for Batten’s disease.
It was then that Mirryn was diagnosed with Batten’s disease – a disorder of the nervous system that begins in childhood.
There are different forms of the disease and together they affect an estimated one in 100,000 people worldwide – including one or two of every 50,000 children in the US and up to six babies born every year in the UK.
Mirryn has CLN1 Batten Disease, which usually starts to show signs at 18 months of age when the brain cells die quickly.
Developmental skills such as standing, walking and talking are never achieved or are gradually lost in children with the disease.
Children often develop attacks at the age of two and eventually become blind.
At the age of three, children can become completely dependent on a caregiver and do not normally survive after early childhood.
Mirryn is being cared for by specialists at the Great Ormond Street Hospital in London, but due to the rarity of the disease, no treatment has been found.
Mirryn has deteriorated rapidly since her diagnosis.
Mirryn had an MRI scan that showed drastic changes in her brain, which Cunningham said were clearly visible in the images. Pictured, in the hospital
Mirryn has CLN1 Batten Disease that most patients will die from early childhood
Mrs. Cunningham admits that every day can be her last, and she doesn’t think her daughter will make Christmas.
“It’s terrible to see,” she said. “She has lost eye contact, cannot communicate, her vision goes away and she cannot swallow.”
As the condition deteriorates, children have serious eating problems and often need a feeding probe.
Mrs. Cunningham had dreamed of bringing her little girl to Disneyland, but will now organize a Disney party at her home in the late summer.
She has started a crowdfunding campaign to raise the money for a ‘P Pod’ – a chair that helps to protect the ‘weak’ attitude of her daughter.
Mirryn cannot support herself and the chair allows her to breathe comfortably.
You can donate to the GoFundMe page here.