EXCLUSIVE: Five-year-old girl given just four years to live: Little Darcy fights to beat doctor’s verdict after rare brain disease robs her of the 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 having trouble walking, her mother, Niomi, took her to the hospital
- Darcy was diagnosed with metachromatic leukodystrophy during an MRI scan
- The brain disease can cause dementia and Darcy now requires 24-hour care
A toddler diagnosed with metachromatic leukodystrophy at the age of three may not live to see her ninth birthday, her mother has revealed.
Darcy Ratchford, five, from Wigan, lived a normal life until she turned three when mum Niomi Horrocks decided to take her to hospital for a check on her daughter’s mobility.
Doctors gave her an MRI scan and delivered the devastating news: she suffered 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 taken away her mobility, vision, cognitive development, speech and ability to eat or drink. She is now 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.
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
Mrs. Horrocks recently took Darcy to Disneyland Paris, a place Darcy always wanted to go
Darcy’s life expectancy is estimated, and Mrs. Horrocks believes she will live well beyond nine years.
Mr Horrocks hopes Darcy’s story will raise awareness about the condition
Mrs Horrocks 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 Horrocks said the hardest part of the diagnosis was watching her daughter live a ‘normal’ life for three years before the disease manifested.
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 make it to her ninth birthday.
And Ms Horrocks hopes her story will raise awareness about the little-known condition.
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 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.