EXCLUSIVE: The-three-year-old girl with dementia: Doctors say little Darcy won’t make her ninth birthday as rare brain disease has robbed her of ability to walk, eat or drink

Australia
By William
  • Little Darcy Ratchford, 5, was a healthy young girl until she turned three in 2021
  • But when Darcy started having trouble walking, her mother, Niomi, took her to the hospital
  • Darcy was diagnosed with metachromatic leukodystrophy during an MRI scan
  • The brain disease causes dementia and Darcy now requires 24-hour care

By Dan Coles

Published: | Updated:

A toddler who was diagnosed with dementia at the age of three has now been told she will not live to see her ninth birthday as the disease is robbing her of her independence.

Darcy Ratchford, five, from Wigan, lived a normal life until she turned three when her mother Niomi Horrocks decided to take her to hospital for a check on her daughter’s mobility.

After an MRI scan, doctors determined she had a rare brain disease called Metachromatic Leukodystrophy (MLD), which has a life expectancy of up to nine years and causes dementia.

Two years since her diagnosis and her life has been completely changed as the horrific disease has taken away her mobility, vision, cognitive development, speech, ability to eat or drink, and now she is tube fed while requiring 24 hour care.

But Mrs Horrocks, 24, refuses to let the terminal condition get in the way of what little time Darcy has left and is now raising money to create as many memories as possible before the dreaded time arrives when they can no longer enjoy the movie. to live.

Darcy Ratchford showed no signs of the disease for the first three years of her life, but just two years later she can no longer do anything for herself

Her mother Niomi Horrocks, a former dementia care assistant, is now her full-time caregiver

Her mother Niomi Horrocks, a former dementia care assistant, is now her full-time caregiver

Mother Mrs Harrocks (right) and father Adam Ratchford (left) plan to make Darcy's final years as memorable as possible

Mother Mrs Harrocks (right) and father Adam Ratchford (left) plan to make Darcy’s final years as memorable as possible

Mrs. Harrock recently took Darcy to Disneyland Paris, a place Darcy always wanted to go

Mrs. Harrock recently took Darcy to Disneyland Paris, a place Darcy always wanted to go

Darcy's life expectancy is estimated, and Mrs. Harrock believes she will live well beyond nine years.

Darcy’s life expectancy is estimated, and Mrs. Harrock believes she will live well beyond nine years.

Mr Harrock hopes Darcy's story will raise awareness about the condition

Mr Harrock hopes Darcy’s story will raise awareness about the condition

What is metachromatic leukodystrophy (MLD)?

Metachromatic leukodystrophy (MLD) is a rare, genetic, degenerative, neurometabolic disorder that affects approximately one in 40,000 people (mainly children) worldwide.

It is a hereditary disease, but the parents are usually not affected.

Currently it is a disease for which there is no cure. Those affected by MLD have a deficiency of the arylsulfatase A enzyme, which is responsible for breaking down fatty substances called sulfatides into harmless chemicals.

A person with MLD cannot break down these sulfatides, causing them to build up in the body.

This buildup causes the destruction of myelin (demyelination), the protective layer on nerve fibers that allows communication between the nerves and the brain.

All information courtesy of The Evanosky Foundation.

Mrs Harrocks said: “I think I was in denial when I was told she would lose her mobility, speech and ability to eat because she was just normal for the first three years of her life. But the progression all happened so quickly that I didn’t really have time to process it or my feelings.

‘I’m taking each day as it comes because each day varies for Darcy and it depends on how the pain goes from day to day for her. I’m so grateful that she has the ability to smile and laugh and show some emotion.

‘I had to leave my job as a dementia carer to become Darcy’s full-time carer. My family supports her and we try to make as many memories with her as possible. I’m just going to get on with it, like any parent would.”

Mrs Harrock said the hardest part of the diagnosis was watching her daughter live a ‘normal’ life for three years, and then watching Darcy begin to wander.

She added, “I’m grateful to have had three healthy years with her.

‘I’m proud because she is always so happy and smiling, unless she is in pain. She takes several medications daily to keep it under control. Furthermore, she always laughs and is a cheerful person.’

Darcy has regular check-ups with her specialist so they can keep the disease under control, but due to its rapid progression she may not live to see her ninth birthday.

And Ms Harrock hopes her story will raise awareness about the little-known condition.

Mr Harrock added: ‘They gave us a life expectancy of five to eight years from her diagnosis, but I believe she is a fighter and will exceed that expectation. She is currently very alert and content.

‘I think MLD should be added to the foot prick test because treatment is only available for pre-symptomatic children, but the diagnosis does not come until symptoms have started, so it is too late, as in Darcy’s case.

‘The MLD Foundation is doing everything it can to add it to the foot prick test.’

Their GoFundMe is still live, and you can donate here.

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