The Unbreakable Spirit of SMA Parents Fighting for Change
Health Editor Martin Bagot has documented the powerful stories of families affected by spinal muscular atrophy (SMA) for the Mirror's ongoing campaign. These inspirational parents, including pop singer Jesy Nelson who has children with the condition, are demanding urgent reform within the NHS to prevent other families from enduring similar heartbreak.
A Pattern of Devastating Late Diagnoses
Every parent understands the natural anxieties that accompany having a baby, but those with children diagnosed with spinal muscular atrophy share remarkably similar and distressing experiences. They typically leave hospital with what appears to be a perfectly healthy newborn, only to notice concerning changes as weeks pass. Kicking legs become less active, breathing grows laboured, and feeding becomes increasingly difficult.
Parents repeatedly voice their worries to doctors, nurses, and health visitors, only to be reassured that their baby is "fine." Tragically, babies continue losing weight, require readmission to hospital, and some even end up in intensive care following common infections. The NHS consistently fails to investigate the tell-tale symptoms that parents insist they are witnessing – diminished movement and breathing struggles.
The Shocking Reality of Parent-Led Diagnosis
In numerous cases, parents must resort to researching symptoms online and self-diagnosing their child with SMA before medical professionals take action. Panicked parents then inform doctors and nurses about the probable diagnosis, which is subsequently confirmed through a simple blood test. By this critical juncture, irreversible damage has already occurred to the child's motor neurons.
Families receive confirmation that their baby has an inherited genetic fault affecting the SMN1 gene, which produces essential proteins for maintaining nerve cell health. Without this protein, motor neurons deteriorate and muscles waste away. Although the NHS now provides three transformative treatments that either correct the faulty gene or supply replacement proteins, preventing further muscle degeneration and saving lives, the timing remains crucial.
The Burden of Preventable Disability
Parents carry the heavy knowledge that earlier intervention could have allowed their child to live a relatively normal life, rather than facing severe disability. No parent should bear this burden after diligently raising concerns that were dismissed by a healthcare system seemingly unaware of the condition's symptoms.
Since 2021, Bagot has listened to these courageous parents share their stories, consistently struck by the profound injustice they face. They mourn the loss of the life they envisioned for their child while simultaneously blaming themselves for the inevitable challenges their child will encounter.
The Mirror's Campaign for Universal Screening
The Mirror is advocating for all UK babies to be screened for spinal muscular atrophy at birth, bringing Britain in line with most other developed nations. The current failure to implement universal screening represents what many consider a national scandal, though its rarity has kept it from broader public consciousness.
The SMA community has formed a close-knit network where parents provide exceptional support to one another, having endured experiences that outsiders cannot fully comprehend. Amid the darkness, they find hope – treated children can attend school, laugh, make friends, and bring immense joy to their families. Cognitively, these children are as sharp as their peers, though their long-term future remains uncertain as treatments are relatively new.
A Generation of Survivors and Advocates
These children represent the first SMA generation in human history with a genuine chance of surviving childhood. As they mature into adulthood, many will gain public voices, ensuring the legacy of Britain's delayed screening implementation becomes widely recognised for what it truly is.
Celebrity involvement has proven crucial in raising awareness. Pop singer Jesy Nelson's brave decision to speak publicly about her children's late SMA diagnosis has compelled those in power to pay attention. Health Secretary Wes Streeting is now applying pressure to the UK National Screening Committee, which has delayed SMA screening recommendations for too long.
The Path Forward Through Parental Resilience
Adding SMA testing to the NHS heel prick test for newborns would represent a monumental victory achieved through the relentless campaigning of SMA parents. Their resilience and bravery aim to spare future families from experiencing the same double injustice they have endured – fighting both the condition and a system that failed to recognise it promptly.
These parents will never surrender their campaign until every newborn receives this life-changing screening, ensuring early diagnosis and intervention becomes standard practice across the United Kingdom.
