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HealthQuiet 8d · day 8

Mother's essay recounts raising Elsie, born with ultra-rare RARB gene disorder

Guardian essay by Christelle Randall describes life with her daughter Elsie, one of fewer than 100 known cases worldwide of a RARB gene mutation.

newest coverage 7d agosummary written 7d ago4 pieces1 likes & upvotes MastodonNewswiresGoogle NewsHacker News

What to know

  • Elsie has a mutation in the RARB gene, a condition with fewer than 100 known cases worldwide, causing progressive effects on eyes, brain, lungs and spinal cord.
  • She spent most of her first eight months hospitalised due to severe apnea episodes requiring emergency manual ventilation.
  • She has been home with her parents since February 2026 after being born in March 2025, and is legally blind with developmental delays.

“at 18 months she is behind in her development and we don’t yet know if she will be verbal”

Christelle Randall, Elsie's mother · The Guardian ↗ · Sep 15

Elsie Subject of the essayChristelle Randall Elsie's mother, essay authorDan Elsie's father, Christelle's partner

Mother's essay recounts raising Elsie, born with ultra-rare RARB gene disorder
theguardian.com

How it unfolded 1 development · click the chart to see its coverage articlesposts

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Sep 16Sep 17Sep 18Sep 19Sep 20Sep 21Sep 22yesterdaynow · 5:46 AM ET
  1. 1

    Guardian publishes Christelle Randall's essay on raising Elsie

    The Guardian runs the personal essay describing Elsie's diagnosis, symptoms, home life and the family's daily experience of the rare condition.

    “so rare that there are fewer than 100 known cases in the world…”
    — Christelle Randall
    1. 2 outlets The girl with a will to live: the love, hope and pain of raising Elsie – my one in 163 million daughter

      first by Guardian Science, 8d ago · also The Guardian

  2. background

    Elsie feels the ocean for the first time — During the summer, Elsie experiences the sea on her feet for the first time, with her parents supporting her weak head control.

  3. background

    Elsie comes home from hospital — After most of her first eight months in hospital, Elsie has been living at home with her mother Christelle Randall and partner Dan since February 2026.

  4. background

    Elsie spends her first eight months largely hospitalised — She repeatedly stops breathing and turns blue during episodes lasting two to three minutes, requiring emergency manual 'bagging' to force air into her lungs, sometimes multiple times a day.

  5. background

    Elsie is born with a de novo RARB gene mutation — Elsie is born with a mutation in the RARB (retinoic acid receptor beta) gene, a condition so rare that fewer than 100 cases are known worldwide; the mutation is not hereditary and its effects are progressive.