Former Little Mix star 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 singer, who welcomed the twins prematurely last May with Zion Foster, shared the diagnosis in an emotional Instagram video last year.
Nelson has since begun campaigning for SMA1 screenings from birth, and started a petition to add the condition to the newborn blood spot screening test, also known as the heel prick test. In an emotional 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.”
Giles Lomax, CEO of Spinal Muscular Atrophy UK (SMA UK), described SMA as “a rare neuromuscular condition” affecting approximately “one in 14,000 births per year,” characterised by “the loss of motor function across the whole body.” He explained its genetic nature, noting that “there’s a one in four chance that your mum and dad could pass on the faulty SMN1 genes, which is what then means that you have SMA.”
There are four primary types of SMA. Type 1, the most severe, typically manifests in babies under six months old, who are “really floppy infants that have difficulty breathing, coughing and swallowing,” and “tend to never sit and don’t go past the lying phase.” Type 2 emerges between six and 17 months, with children often able to sit but unable to stand or walk. Type 3 is diagnosed in older children who may lose the ability to walk after three years. Type 4, the rarest, develops in adulthood.
Key signs of SMA Type 1 include “floppiness,” difficulty lifting the head or feeding, “belly breathing,” and “abnormally low muscle tone” in limbs. Diagnosis is confirmed via a blood test to identify the faulty SMN1 gene. Lomax stressed the importance of early detection and treatment, stating that “if babies have that blood test done really early and are given the disease modifying therapies, in many cases these children can grow up to follow normal development pathways.” Without treatment, the prognosis for Type 1 is grim, with “the likelihood of them surviving past two is very slim.”
Nelson recalled the prognosis from Great Ormond Street Hospital: “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 profound gratitude that her daughters have received treatment, acknowledging that “if they don’t have it, they will die,” but noted the relentless nature of their medical journey, feeling “the hospital has become my second home.”
