Jesy Nelson: Former Little Mix star told twin baby daughters may never walk – BBC

Lead

Jesy Nelson has revealed that her twin daughters, Ocean Jade and Story Monroe, born prematurely in May, have been diagnosed with Spinal Muscular Atrophy (SMA) type 1. In a Sunday Instagram video the singer said clinicians at Great Ormond Street Hospital in London warned the girls will “probably never walk” and may not regain neck strength. Nelson said urgent treatment has begun and described the past months as the most emotionally gruelling period of her life. She said she shared the diagnosis to speed identification of other affected babies and to mobilise support.

Key Takeaways

• Twins: Ocean Jade and Story Monroe Nelson-Foster were born prematurely at 31 weeks in May; both have been diagnosed with SMA type 1.
• Severity: SMA type 1 is described as the most severe form, affecting limbs, breathing and swallowing, and can be life-limiting without timely treatment.
• Prognosis: Clinicians at Great Ormond Street Hospital told Nelson the girls are “probably never going to be able to walk” and may not regain neck strength.
• Treatment: Nelson said the children have received treatment; the NHS approved the gene therapy Zolgensma for babies with SMA in 2021, where timing is critical.
• Numbers: SMA UK estimates around 47 babies were born with SMA in the UK in 2024, and roughly one in 40 people carry the altered gene.
• Screening gap: Current UK newborn screening for SMA is limited to babies with an affected sibling; campaigners want SMA added to the routine blood spot test.

Background

Spinal Muscular Atrophy is a genetic condition that damages motor neurons and leads to progressive muscle weakness. Type 1 is the earliest and most severe presentation, typically apparent in infancy and often compromising breathing and feeding. In recent years new therapies, notably the one-off gene replacement treatment marketed as Zolgensma, have shifted prognosis for some infants when delivered very early. The National Health Service approved that therapy for eligible babies in 2021, but its effectiveness depends on prompt diagnosis before irreversible nerve damage occurs.

Routine newborn blood spot screening in the UK currently checks for ten rare but serious conditions; SMA is not yet included universally and is tested only when a sibling is affected. Charities and families have argued that adding SMA to the screening panel would identify more infants in the narrow window when gene therapies can prevent severe progression. Premature birth, as in Nelson’s case at 31 weeks, can complicate early recognition of neuromuscular weakness and delay diagnosis.

Main Event

Nelson posted an Instagram video on Sunday saying that after months of appointments the twins were assessed at Great Ormond Street Hospital and diagnosed with SMA type 1. She described clinical findings of reduced leg movement and feeding difficulties that prompted specialist review. According to her account, clinicians warned the family that the girls would likely never walk and might not regain neck control, leaving them with significant disabilities.

Nelson said the twins have already received treatment she called lifesaving, and that at times she has had to act as a nurse, including supporting breathing with machines. Her partner, Zion Foster, reshared the announcement with a smiling picture of the girls and a message expressing love and resilience. Nelson, who left Little Mix in 2020 and has pursued a solo career since, said the last three months had been the most heartbreaking of her life but that she believed the girls could “defy all the odds” with the right care.

The singer has spoken previously about pregnancy complications and has publicly celebrated the strength of her body since giving birth. Her decision to disclose the diagnosis was framed as an effort to speed recognition of SMA in other children and to highlight the narrow window for effective intervention.

Analysis & Implications

The public disclosure from a high-profile parent can focus attention on gaps in newborn screening and access to time-critical treatments. SMA type 1 progresses rapidly in the first months of life, and irreversible motor neuron loss means that even approved therapies have limited benefit if administered too late. That dynamic underpins campaigners’ push to expand the newborn blood spot panel to include SMA so eligible infants can be identified before symptoms progress.

Policy change would involve clinical, logistical and funding decisions. Adding a condition to routine screening requires evidence on test performance, treatment availability, and the health economic case. Zolgensma is an expensive therapy, and while the NHS has approved its use for some infants, expansion of screening would increase the number of babies identified and needing fast referral pathways to specialist centres like Great Ormond Street Hospital.

For families, diagnosis brings immediate care decisions, emotional strain and long-term planning for disability support. Public awareness driven by celebrity cases can speed referrals and donations to charities, but it can also create unrealistic expectations about outcomes. Clinicians caution that while new treatments transform prospects for some infants, long-term function varies and depends on age at treatment and disease severity at presentation.

Comparison & Data

The table summarises figures cited by SMA UK and reporting on NHS decisions. The carrier frequency means many parents will be unaware they carry the altered gene until an affected child is born. Because irreversible neurological damage can precede symptoms, the timing of detection and treatment is the critical variable affecting outcomes.

Reactions & Quotes

Family and public reaction has been immediate, mixing support with calls for better screening and rapid access to treatment.

“Still smiling through all the challenges. Daddy loves you so much.”

Zion Foster (father, social media)

The caption posted by Nelson’s partner emphasised family resilience while acknowledging the practical and emotional strain of caring for infants with serious medical needs.

“After endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA type 1.”

Jesy Nelson (Instagram video)

Nelson framed the diagnosis as both devastating and urgent, stressing the importance of rapid identification so treatment can be given in time to affect outcomes.

Unconfirmed

• The exact nature of the treatment Nelson’s daughters received was not specified publicly; while treatment has been reported, it is not confirmed whether Zolgensma or another therapy was used.
• Long-term functional outcomes for the twins remain uncertain and depend on age at treatment and individual response; prognostic specifics were not provided.
• Any immediate changes to UK newborn screening policy prompted by this case are not confirmed; policy decisions require formal review and evidence.

Bottom Line

Jesy Nelson’s public account of her daughters’ SMA type 1 diagnosis highlights the clinical urgency and emotional weight of early-onset genetic disease. The case underscores how rapid diagnosis can be decisive for access to life-altering therapies, and it renews calls from charities to expand newborn screening for SMA in the UK. Families facing similar diagnoses need swift specialist assessment, co-ordinated care pathways and long-term social and medical support.

Policymakers will weigh clinical benefit, budgetary impact and implementation logistics if screening expansion is considered. In the meantime, high-profile disclosure may accelerate referrals, charitable support and public debate about how to find and treat affected babies as early as possible.

Sources

• BBC News — mainstream news report summarising Nelson’s Instagram announcement and hospital assessment (media).
• SMA UK — UK charity providing prevalence estimates, carrier information and screening advocacy (charity/advocacy).
• Great Ormond Street Hospital — specialist paediatric hospital where the twins were assessed (official hospital site).