Doctors say little Darcy won’t make her ninth birthday as rare brain disease has robbed her of ability to walk, eat or drink

• Little Darcy Ratchford, 5, was a healthy young girl until she turned three in 2021
•  But When Darcy started to struggle to walk, her mum, Niomi, took her to hospital
•  An MRI scan diagnosed Darcy with Metachromatic Leukodystrophy
• The brain disease causes dementia and Darcy now needs 24-hour care

A toddler who was diagnosed with dementia at just three years old has now been told that she won’t see her ninth birthday as the disease robs 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 to have a check up regarding her daughter’s mobility.

After having an MRI scan docs diagnosed her with a rare brain disease called Metachromatic Leukodystrophy (MLD), which has a life expectancy of up to nine years old, and causes dementia. 

Two years since her diagnosis and her life has completely changed as the hideous disease has taken away her mobility, sight, cognitive development, speech, ability to eat or drink, and is now tube fed while needing 24-hour care. 

But Ms 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 she can before the dreaded time comes when they won’t be able to enjoy life.

What is Metachromatic Leukodystrophy (MLD)? 

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

It is an inherited disease, but parents are typically not affected.

At present, it is a disease for which there is no cure. Those affected with MLD are deficient in 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 accumulate in the body. 

This accumulation causes the destruction of myelin (demyelination), which is the protective covering on the nerve fibers that enables communication between the nerves and the brain.

All information courtesy of The Evanosky Foundation. 

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

‘I just take each day as it comes because every day varies for Darcy and it depends how she is day to day pain wise. I’m just so grateful 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 are supportive and we just try to make as many memories with her as we can, I just get on with it like any parent would really.’

Ms Harrock said the hardest part of the diagnosis was watching her daughter have a ‘normal’ life for three years, and then watching Darcy start to digress.

She added: ‘I’m grateful to have had 3 healthy years of her.  

‘I’m proud because she’s always  so happy and smiling unless she’s in pain, she’s on multiple medications daily to help manage it. Other than that she’s just always smiling and a happy little soul.’

Darcy regularly has check ups with her specialist so they can keep on top of the disease, but due to it’s rapid progression she may not see her ninth birthday. 

And Ms Harrock hopes that her story will create greater awareness on 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’s a fighter and will exceed that expectancy. She’s very alert and content at the moment. 

‘I think MLD needs to be added to the foot prick test as treatment is only available for pre-symptomatic children, but diagnosis only comes once symptoms have started so it’s too late like in Darcy’s case. 

‘The MLD foundation are working hard to try and get it added to the foot-prick test.’

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