Particle.news
Download on the App Store

Jesy Nelson Reveals Twins’ SMA Type 1 Diagnosis With Prognosis They May Never Walk

Nelson urges faster newborn screening following a type 1 SMA diagnosis requiring urgent care.

Overview

  • In an emotional Instagram video on Sunday, the former Little Mix singer said eight-month-old Ocean Jade and Story Monroe were diagnosed after months of assessments.
  • Specialists at Great Ormond Street Hospital told the family the girls will likely be disabled, may never walk, and may not regain neck strength.
  • Nelson said both babies received urgent treatment and credited it with keeping them alive, stressing that time is critical for effectiveness.
  • She described becoming a full-time carer, learning to use breathing machines and attending frequent hospital appointments since the diagnosis.
  • Sharing the news to raise awareness, Nelson highlighted that UK newborn screening does not routinely test for SMA and encouraged parents to seek prompt evaluation if concerned.