- Little Darcy Ratchford, 5, was a healthy young girl until she turned three in 2021
- But when Darcy had trouble walking, her mother Niomi took her to the hospital
- An MRI scan diagnosed Darcy with metachromatic leukodystrophy
- The brain disease leads to dementia and Darcy now requires 24-hour care
A toddler diagnosed with dementia aged just three will not live to see her ninth birthday, her mother has revealed.
Darcy Ratchford, five, from Wigan, lived a normal life until she was three years old when mother Niomi Horrocks decided to take her to hospital to have her daughter’s mobility checked.
Doctors gave her an MRI scan and delivered the devastating news: she was suffering from a rare brain disease called metachromatic leukodystrophy (MLD), which has a life expectancy of up to nine years and causes dementia.
Two years later, her life has changed completely as the disease has affected her mobility, vision, cognitive development, speech and ability to eat and drink and she now requires tube feeding and 24-hour care.
But Ms Horrocks, 24, refuses to let her terminal condition affect what little time Darcy has left and is now raising money to create as many memories as possible.
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 on her own
Her mother Niomi Horrocks, a former dementia care assistant, is now her full-time carer
Mrs. Horrocks recently took Darcy to Disneyland Paris, a place Darcy has always wanted to visit
Darcy’s life expectancy is estimated and Mrs Horrocks expects her to live well over nine years.
Mr Horrocks hopes Darcy’s story will raise more awareness of the disease
What is Metachromatic Leukodystrophy (MLD)?
Metachromatic leukodystrophy (MLD) is a rare, genetic, degenerative neurometabolic disease that affects approximately one in 40,000 people (mainly children) worldwide.
It is a hereditary disease, but parents are usually not affected.
Currently it is a disease for which there is no cure. People with MLD lack the enzyme arylsulfatase-A, 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 accumulation leads to the destruction of myelin (demyelination), the protective covering of nerve fibers that allows communication between the nerves and the brain.
All information courtesy of the Evanosky Foundation.
Ms Horrocks said: “I think I was in denial when I was told she would lose her mobility, speech and ability to eat as she was completely normal for the first three years of her life. But it happened so quickly.” I didn’t really have time to process it or my feelings.
“I just take each day as it comes because for Darcy every day is different and it depends on how she feels with the pain on a daily basis.” I’m just so grateful that she has the ability to smile and to laugh and show emotions.
“I had to give up my job as a dementia carer to become Darcy’s full-time carer. “My family supports her and we just try to make as many memories with her as possible. I just carry on like any parent would.”
Ms Horrocks said the hardest part of the diagnosis was having to give her daughter a “normal” life for three years before the disease struck.
She added: “I’m grateful to have had three healthy years with her.”
“I’m proud because she’s always so happy and smiling, unless she’s in pain. She takes several medications a day to cope. “Otherwise she is always smiling and a happy little soul.”
Darcy has regular check-ups with her specialist to keep track of the disease. However, due to the rapid progression, she may not live to see her ninth birthday.
And Ms Horrocks hopes her story will raise greater awareness of the little-known disease.
Mr Horrocks 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 life expectancy. “She is very alert and happy at the moment.
“I think MLD needs to be added to the foot prick test because treatment is only available for children without symptoms, but diagnosis is not made until symptoms have started, so as in Darcy’s case, it is too late.”
“The MLD Foundation is working hard to get it included in the foot piercing test.”
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