West Lothian 'miracle' toddler, 2, dies in mother's arms after childhood dementia battle

A West Lothian toddler with a rare incurable condition which has "eaten away half her brain" has died in her mother's arms.

Wednesday, 26th June 2019, 1:02 pm
Mum Vicky Cunningham with Mirryn and her special dog, Alvie.

Little Mirryn Cunningham was diagnosed in January with CLN1 Batten disease - also known as childhood dementia - and lost the ability to eat, walk, see properly or stand, requiring 24-hour round-the-clock care.

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Vicky, from Uphall, wrote on Facebook: "My baby girl, I lost half my heart yesterday, I keep telling myself you're not in pain and dancing about the sky but it doesn’t make it any easier to accept.

Mirryn in the specialist P Pod which her family had fundraised for.

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"You were loved since the moment I knew about your existence in my womb till the day you took your last breath in my arms, I’ll love you till I take my last breath and I’ll fight to change what was our battles!

"No one will forget your name, I looked at the sky many times and asked for a miracle and then was sent one in the form of you, mummy's Miracle Mirryn, you touched the world and changed how medical staff manage end of life care! That alone touches my heart that you will make end of life easier for future children. You are my inspection to go on, till I have you in my arms again, know that I’ll love you every day and never forget our memories together. Your mummy."

What is Batten disease?

According to the National Institute of Neurological Disorders and Stroke, Batten disease is a rare disorder of the nervous system which results in death and typically starts in childhood.

Common symptoms include vision loss, seizures, delay and eventual loss of skills previously acquired, dementia, and abnormal movements.

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.

Over time, affected children may suffer from worsening seizures and progressive loss of language, speech, intellectual abilities (dementia), and motor skills. Eventually, children with Batten disease become blind, wheelchair bound, bedridden, unable to communicate, and lose all cognitive functions.

There is no cure for these disorders but a treatment for one of the forms (CLN2 disease) has been approved by the U.S. Food and Drug Administration.

Mirryn's case

Mirryn was diagnosed with delayed myelination in 2017, but Vicky pushed for a second MRI scan in January which revealed the severity of her brain’s deterioration.

After her diagnosis, Mirryn had to be fed through a feeding button in her stomach and had to receive her medication every four hours throughout the day and night.

She set up a fundraising page for her daughter with the hope of raising £2500 but the story struck a chord across the world, reaching a total of over £5000.