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 may prevent them from ever walking. The 34-year-old welcomed the twins prematurely with partner Zion Foster in May last year, and later shared the diagnosis in an emotional Instagram video, describing the "gruelling" months of appointments that led to the discovery.
Nelson has since campaigned for SMA to be added to the newborn blood spot screening test, commonly known as the heel prick test. Speaking to Health Secretary Wes Streeting on ITV's This Morning, she 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 without screening, many more families will face the same ordeal.
Recalling the prognosis from Great Ormond Street Hospital, Nelson said: "We were told that they're probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled." She expressed gratitude that her daughters have received treatment, noting that without it, "they will die," but described the relentless medical schedule and said the hospital has become her second home.
Giles Lomax, CEO of Spinal Muscular Atrophy UK, described SMA as a rare neuromuscular condition affecting around one in 14,000 births per year, characterised by loss of motor function across the body. He explained that it is genetic and hereditary, with a one in four chance that both parents pass on the faulty SMN1 gene. There are four main types; Type 1, the most severe, appears in babies under six months, who are often "floppy" and have difficulty breathing, coughing and swallowing, and typically never sit independently.
Diagnosis is confirmed via a blood test for the faulty gene. Lomax stressed that early testing is vital, as disease-modifying therapies can allow many children to follow normal development. Without treatment, however, the likelihood of surviving past two years for Type 1 is very slim. He also highlighted signs such as "belly breathing" and abnormally low muscle tone in limbs, which may indicate the condition.
