Former Little Mix star Jesy Nelson has shared an emotional and deeply personal campaign after her twin daughters were diagnosed with a rare and severe genetic condition. The singer, aged 34, revealed that her premature twins, Ocean Jade and Story Monroe Nelson-Foster, have Spinal Muscular Atrophy (SMA) Type 1, a diagnosis that may prevent them from ever walking.
A Mother's Heartbreaking Revelation
In a candid Instagram video posted earlier this month, Nelson detailed the "gruelling three to four months" of endless medical appointments that led to the discovery. The twins, born prematurely in May 2025 to Nelson and her fiancé Zion Foster, were confirmed to have what she described as "a severe muscle disease called SMA Type 1."
Recalling the prognosis from specialists at Great Ormond Street Hospital, Nelson shared the devastating reality: "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. The best thing we can do right now is to get them treatment, and then just hope for the best."
The Campaign for Change
Driven by her family's experience, Jesy Nelson has launched a determined campaign to have SMA Type 1 added to the newborn blood spot screening test, commonly known as the heel prick test. She has started a petition and taken her cause directly to policymakers, including an emotional conversation with Health Secretary Wes Streeting on ITV's This Morning.
During the broadcast, Nelson expressed her frustration and urgency: "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. There's going to be so many more babies that are going to be diagnosed with this and so many families that are going to have to experience what I'm going through right now when it doesn't need to be happening."
Wes Streeting was visibly moved during the exchange, highlighting the personal impact of Nelson's advocacy on government health priorities.
Understanding Spinal Muscular Atrophy
To provide expert insight into this challenging condition, the Press Association spoke with Giles Lomax, CEO of Spinal Muscular Atrophy UK (SMA UK). Lomax described SMA as "a rare neuromuscular condition" that affects approximately "one in 14,000 births per year," characterised by "the loss of motor function across the whole body."
He explained its genetic basis: "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."
The Four Types of SMA
Lomax outlined the four primary types of this condition, each with distinct characteristics:
- Type 1: The most severe form, typically manifesting in babies under six months old. "Babies with this tend to be really floppy infants that have difficulty breathing, coughing and swallowing," Lomax noted, adding that they "tend to never sit and don't go past the lying phase."
- Type 2: Usually emerges between six and 17 months, with affected children often able to sit but unable to stand or walk. They may experience "big motor development, weaknesses and difficulty in coughing and potentially have scoliosis in their spine."
- Type 3: Diagnosed in older children who initially follow normal developmental paths but may begin to lose the ability to walk after three years.
- Type 4: The rarest form, developing in adulthood (18 years and above). It is often milder in physical capabilities but remains a serious condition that can be challenging to diagnose due to potential overlaps with other conditions.
Early Signs and Diagnosis
For SMA Type 1, which affects Nelson's daughters, Lomax highlighted several key indicators. "Floppiness" is a significant sign, particularly if a baby struggles to lift their head or has difficulty feeding. "Belly breathing," where breathing is more abdominal than in the upper chest, is another common symptom. Additionally, these infants often exhibit "abnormally low muscle tone" in their limbs, meaning "they don't kick and wiggle their arms" as expected.
Diagnosis is confirmed via a blood test to identify the faulty SMN1 gene. Lomax stressed the critical importance of early detection: "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."
Living with SMA and Available Treatments
Individuals with SMA face numerous health challenges due to weakened muscles, particularly respiratory ones. This makes them susceptible to infections, as they "can't cough as well," leading to frequent hospital admissions. Daily life requires extensive medical support, including numerous hospital appointments across specialities like occupational therapy, physiotherapy, and neurology, alongside reliance on equipment such as orthotics, spinal braces, respiratory aids, wheelchairs, and housing adaptations.
Jesy Nelson acknowledged this relentless reality, stating that "the hospital has become my second home." She expressed profound gratitude that her daughters have received treatment, acknowledging that "if they don't have it, they will die."
Fortunately, three disease-modifying therapies are available in the UK:
- Zolgensma: A "one-time infusion" gene therapy administered to babies under 12 months old.
- Risdiplam: An oral medication taken daily for life, suitable for patients from infancy to adulthood.
- Nusinersen: An injection directly into the spinal cord, required every three to four months for life.
A Beacon of Hope
Jesy Nelson's candid revelation and determined campaigning have shone a spotlight on the profound challenges faced by families navigating an SMA diagnosis. While the journey ahead for Ocean Jade and Story Monroe will undoubtedly be arduous, the availability of these disease-modifying therapies offers a significant beacon of hope.
Her advocacy underscores how early screening could transform outcomes for countless children born with this rare and severe condition, potentially allowing them to follow normal developmental pathways with timely intervention. As Nelson continues her campaign, she brings both personal experience and public attention to a critical health issue that affects families across the nation.
