When Jesy Nelson shared an emotional Instagram video in January 2026, the former Little Mix singer did more than reveal a private family tragedy. She disclosed that her eight-month-old twin daughters, Ocean Jade and Story Monroe, had been diagnosed with type 1 spinal muscular atrophy (SMA), a rare genetic condition that severely weakens muscles and can be life-threatening. Doctors at Great Ormond Street Hospital told her the girls would “probably never” walk, highlighting the devastating impact of a disease in which motor neurons deteriorate irreversibly once symptoms appear.
Gaps in Early Detection
Jesy’s twins were diagnosed only after months of uncertainty, underscoring a major divide in how countries detect SMA in newborns. In the UK, SMA is not included in the standard newborn blood spot test, meaning most families only receive a diagnosis after visible symptoms such as weak limb movement or poor head control emerge. By contrast, the United States has rolled out nationwide newborn screening for SMA, allowing many affected babies to be treated before significant nerve damage occurs.
For Jesy’s daughters, this delay meant missing the crucial early window when emerging treatments can prevent or limit long-term disability. Specialists at Great Ormond Street stressed that once severe signs have developed, therapy can only manage damage rather than prevent it. Her family’s experience has become a case study in how late diagnosis can alter the course of the disease, sparking renewed scrutiny of the UK’s current screening policy.
Life Reoriented Around Complex Care
Following the diagnosis, Jesy described how she “became like a nurse,” as her daily life shifted to managing complicated home-based care for two medically fragile infants. At home, SMA type 1 care often involves breathing support, feeding assistance and strict infection control, with parents rapidly learning to operate machines and perform procedures usually handled by hospital staff.
For many families in similar situations, this level of care begins in the first year of life and continues indefinitely. The demands can reshape careers, routines and mental health, as parents juggle round-the-clock monitoring, frequent hospital appointments and the emotional strain of an uncertain prognosis. Jesy has spoken of “grieving the life I thought I was going to have with my children,” expressing a sense of loss shared by many parents of children with severe neuromuscular conditions.
High-Cost Gene Therapies and Unequal Access
SMA type 1, once almost uniformly fatal in early childhood, is now at the center of a revolution in genetic medicine. Treatments such as Zolgensma, a one-time gene therapy, can dramatically alter outcomes if given early, but carry price tags of more than $2 million per dose. Jesy’s twins were rushed into treatment after their diagnosis, placing her family among a growing number facing the realities of cutting-edge but extremely expensive therapies.
These treatments have prompted a global debate over who should pay for life-changing drugs for rare diseases and how quickly health systems should adopt them. Advocates argue that early treatment not only improves survival and mobility but can also reduce long-term costs by preventing repeated hospitalizations, intensive respiratory support and extensive rehabilitation. Economists are now examining whether the upfront costs of broad newborn screening and early therapy might ultimately save money for systems such as the NHS, which currently bears the expense of long-term care for children diagnosed late.
Policy Debate and Ethical Questions
Jesy’s public disclosure has intensified pressure on UK authorities to revisit their stance on SMA screening. The UK National Screening Committee has so far declined to recommend adding SMA to the newborn panel, but her case has amplified calls from clinicians, charities and families who say the evidence from countries like the U.S. shows clear benefits from early detection.
The discussion reaches beyond clinical logistics into ethics and equity. Universal screening raises questions about how far health systems should go in testing for genetic disorders, and whether access to both diagnosis and treatment is being distributed fairly. Parents in nations without routine SMA testing now find themselves comparing their situations to those in countries where infants are identified and treated before symptoms appear, questioning why geography should determine a child’s prospects.
At the same time, families affected by SMA confront high-stakes decisions about which therapies to pursue, weighing medical advice, potential benefits and serious financial implications. The pricing strategies of pharmaceutical companies developing these advanced drugs, including Novartis with Zolgensma, continue to attract scrutiny from patient groups and policymakers concerned about balancing innovation with broad access.
Looking Ahead
As Jesy Nelson’s story circulates internationally, it has become a focal point for a wider reckoning over how rare diseases are detected and treated. Her daughters’ experience illustrates both the promise of modern gene-based therapies and the consequences when early detection is not in place. Campaigns led by charities and parents now place greater emphasis on recognizing early signs of SMA, such as weak leg movement, poor head control and feeding difficulties, encouraging families to seek urgent medical assessment even in the absence of routine screening.
For health systems, researchers and industry, the case adds urgency to ongoing discussions about newborn testing, the affordability of advanced therapies and the infrastructure needed to support complex home care. As policymakers review evidence and public pressure builds, Jesy’s decision to share her family’s situation has helped frame SMA not only as a rare medical condition, but as a test of how societies choose to use new medical technologies and how they value equal access to lifesaving interventions.
Sources:
“Jesy Nelson will ‘shout to the rooftops’ about baby muscle condition diagnosis.” BBC News, 7 Jan 2026.
“Spinal muscular atrophy – UK National Screening Committee recommendation.” UK National Screening Committee, 6 Aug 2025.
“Newborn Screening for SMA.” Cure SMA, 2024.
“Zolgensma Creation Story Reveals Truths About Drug Pricing.” ProPublica, 15 Jun 2025.