Our children waited too long for the same diagnosis as Jesy Nelson's twins

Parents of babies born with a life-limiting, rare condition say their diagnoses came months too late, and after they had initially raised the alarm about their symptoms.

Dani-Rae Brown was diagnosed with Spinal Muscular Atrophy (SMA) seven months after her first symptom and now has to use a wheelchair, while Lucian Neale was diagnosed at six weeks old despite showing symptoms in his mother's womb.

SMA is a progressive muscle-wasting disease that can cause death within two years if untreated.

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Source: BBC News, 5 January 2026