Former Little Mix singer Jesy Nelson has revealed that her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic condition that could prevent them from ever walking. The 34-year-old, who gave birth prematurely last May with her partner Zion Foster, shared the news in an emotional Instagram video last year.
Nelson described the "gruelling three/four months" of endless appointments that led to the diagnosis. She has since begun campaigning for SMA1 screenings from birth and started a petition to add the condition to the newborn blood spot screening test, commonly known as the heel prick test.
In a conversation with Health Secretary Wes Streeting on ITV's This Morning, Nelson said: "It's just madness to me that we are living in a day and age now where we have got three treatments that are life changing, and it's still not part of the heel prick test." She warned that more babies will be diagnosed unnecessarily.
Recalling the prognosis from Great Ormond Street Hospital, Nelson said doctors told her the twins would probably never walk or regain neck strength, and would be disabled. She expressed gratitude that they have received treatment, but said the hospital has become her second home.
Giles Lomax, CEO of Spinal Muscular Atrophy UK, explained that SMA is a rare neuromuscular condition affecting about one in 14,000 births per year. It is genetic, with a one in four chance of both parents passing on the faulty SMN1 gene. There are four types; Type 1, the most severe, appears in babies under six months, who are often floppy and have difficulty breathing and swallowing.
Lomax stressed the importance of early diagnosis via a blood test, as disease-modifying therapies can allow children to follow normal development pathways. Without treatment, the likelihood of surviving past two is very slim. Individuals with SMA are also susceptible to infections due to weakened respiratory muscles.
