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Mother's Heartbreak: Watching Daughter's Rare Illness Steal Her Life

Summary

  • A child was diagnosed with Batten disease, a rare, incurable nervous system illness.
  • The condition causes seizures, visual impairment, and loss of mobility.
  • Mother describes watching her daughter regress as 'going backwards'.

Cheryl, a mother from Thornton, Lancashire, is raising awareness about Batten disease, a rare and incurable condition affecting her seven-year-old daughter, Mabel. Diagnosed three years ago, Mabel experiences neurological decline, including seizures, vision loss, and mobility issues, with a prognosis of early death.

Mabel, born in May 2019, initially showed developmental delays around 18 months old, leading to concerns about autism. Her first seizure occurred in January 2023, escalating into more frequent episodes and "drop attacks." Cheryl described the arduous journey of hospital visits and diagnostic uncertainty as "hell."

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