Darcy Ratchford, a five-year-old girl from Wigan, was diagnosed with a rare brain disease called Metachromatic Leukodystrophy (MLD) at the age of three. The disease has caused her to lose her mobility, sight, cognitive development, speech, and ability to eat or drink. She now needs 24-hour care.

Mother Determined to Make Memories Before Daughter Passes Away

Her mother, Niomi Horrocks, is determined to make as many memories as possible with Darcy before the disease takes her life.

She has started a GoFundMe campaign to raise money for activities and experiences that Darcy can enjoy.

Rare Brain Disease Robs Five-Year-Old Girl of Her Independence

MLD is a rare genetic disorder that affects the nervous system. It causes myelin, the protective covering of nerve fibers, to break down. This can lead to a variety of symptoms, including dementia, seizures, and paralysis.

Toddler with Dementia Needs 24-Hour Care as Disease Progresses Rapidly

MLD is a progressive disease, meaning that it gets worse over time. Darcy is currently in the late stages of the disease and needs 24-hour care.

Mother Calls for MLD to Be Added to Newborn Screening Test

Horrocks is advocating for MLD to be added to the newborn screening test. This would allow babies to be diagnosed and treated early, before the disease has a chance to progress.

Conclusion

Darcy Ratchford’s story is a reminder of the devastating impact that rare diseases can have on children and their families. It is also a reminder of the importance of early diagnosis and treatment.

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