- 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.
- An MRI diagnosed Darcy with metachromatic leukodystrophy
- The brain disease causes dementia and Darcy now requires 24-hour care.
A little girl who was diagnosed with dementia aged just three has now been told she will not celebrate her ninth birthday as the illness robs her of her independence.
Five-year-old Darcy Ratchford, from Wigan, lived a normal life until she was three when her mother Niomi Horrocks decided to take her to hospital to check her daughter’s mobility.
After having an MRI, doctors diagnosed him with a rare brain disease called metachromatic leukodystrophy (MLD), which has a life expectancy of up to nine years and causes dementia.
Two years after his diagnosis, his life completely changed: this horrible disease took away his mobility, his vision, his cognitive development, his speech, his ability to eat or drink. She is now fed by tube and requires 24-hour care.
But Mrs Horrocks, 24, refuses to let terminal illness get in the way of Darcy’s little time left and is now raising money to create as many memories as possible before the dreaded moment when they can no longer enjoy them. life.
Darcy Ratchford showed no signs of the disease for the first three years of her life, but just two years later she was unable to do anything for herself.
His mother Niomi Horrocks, a former dementia carer, is now his full-time carer
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.
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 greater 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 are deficient in 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 causes the destruction of myelin (demyelination), which is the protective covering of nerve fibers that allows 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, her speech and her ability to eat as she was normal for the first three years of her life. But the progression happened so quickly that I didn’t really have time to process this or my feelings.
“I just take each day as it comes because each day varies for Darcy and it depends on how she feels about her pain on a daily basis. I am so grateful that she has the ability to smile, laugh and show emotion.
“I had to quit my job as a dementia carer to become Darcy’s full-time carer. My family supports me and we just try to make as many memories with them as possible, I carry on like any parent would really.
Ms Harrock said the hardest part of the diagnosis was watching her daughter live a “normal” life for three years and then seeing Darcy start to slip away.
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 takes several medications daily to help her manage that. Other than that, she is always smiling and a happy little soul.
Darcy has regular checkups with her specialist so they can stay up to date on the disease, but due to its rapid progression, she may not celebrate her ninth birthday.
And Ms Harrock hopes her story will raise greater awareness of the little-known disease.
Mr Harrock added: “They gave us a life expectancy of five to eight years from her diagnosis, but I think she is a fighter and will exceed that. She is very alert and happy at the moment.
“I think MLD should be added to the foot prick test, because treatment is only available for pre-symptomatic children, but the diagnosis is only made once symptoms appear, so it is too late, as in Darcy’s case.”
“The MLD Foundation is working hard to try to add it to the foot prick test.”
Their GoFundMe is still online and you can donate here.