When celebrities speak openly about personal struggles, it can shine a light on issues many may not fully understand.
Jesy Nelson, former Little Mix star, recently brought attention to a gap in newborn health screening in the UK after revealing that her eight-month-old twin daughters, Ocean Jade and Story Monroe, had been diagnosed with Spinal Muscular Atrophy (SMA1).
Her courage has sparked conversations about early diagnosis, treatment, and the language we use when discussing disability.
Controversy Over Choice of Words
During a discussion on This Morning, presenter Cat Deeley commented on Jesy’s twins’ diagnosis, suggesting that “disabled children can live normal lives” if SMA screening is implemented.
While well-intentioned, this phrase was quickly criticized by disability advocates.
Sophie Morgan, a disability campaigner who is paralysed, shared a post from Guardian journalist Frances Ryan highlighting the issue.
Frances wrote: “I’m sure @catdeeley means nothing but kindness, but saying kids ‘could have lived normal lives’ is not appropriate.
Disabled children CAN have careers, marriages, and friendships—but structural barriers and sometimes physical pain are real challenges.”
Sophie echoed this sentiment on Instagram, adding that having disabled people behind the camera and in media discussions ensures a more nuanced perspective.
Jesy Nelson Pushes for SMA Screening in the UK
Jesy appeared on This Morning to highlight that SMA1 testing is not currently available at birth in the UK, despite being routine in 45 other countries, including the United States.
The screening test costs just 36p and can drastically improve outcomes when treatment begins early—before symptoms even appear.
She shared the frustration that early signs in her twins, like bowed legs and unusual breathing patterns, were initially dismissed by health visitors and GPs as common for premature babies.
Had the diagnosis been made at birth, her daughters’ legs could have been saved, and early intervention could have prevented some of the limitations they now face.
The Reality of SMA
Spinal Muscular Atrophy is a genetic disorder affecting motor nerve cells in the spinal cord, leading to progressive muscle weakness.
There are different types:
- Type 1 SMA – Most severe, evident at birth, often prevents sitting and may lead to death by age five.
- Type 2 SMA – Intermediate, children cannot stand independently.
- Type 3 SMA – Mild, difficulty rising from a sitting position.
- Type 4 SMA – Adult onset, symptoms appear in the 20s or 30s.
Jesy’s daughters fall under Type 1, the most severe, meaning they will face lifelong challenges without early intervention.
Parents React to the Cost of Screening
The affordability of SMA1 testing has shocked many.
Jesy’s Instagram post highlighted the simplicity of the 36p test, prompting responses from parents of children living with SMA.
Katie Hughes, whose young son has the condition, described watching Jesy’s segment as “devastating and shocking,” emphasizing how such a small cost could have changed her child’s life and the lives of many others.
Jesy Opens Up About Her Frustration
Jesy shared how overwhelming the past months have been.
She recalled noticing unusual positions and breathing patterns in her twins while in the NICU, yet being reassured that premature babies often develop slower.
“I potentially could have saved their legs,” Jesy admitted.
“I don’t think I’ll ever be able to get over or accept it. All I can do is try my best and make change.”
She explained that early detection would have made a life-changing difference, making it even harder to accept the delay in diagnosis.
Government Response and Next Steps
Health Secretary Wes Streeting acknowledged Jesy’s criticism, describing her challenge as “commendable” and pledging to review both SMA screening and the use of genomic medicine more broadly.
While newborn screening for SMA is not yet standard in the UK, Scotland plans to start screening babies in the spring.
The UK National Screening Committee is reassessing its recommendations due to recent advances in treatment.
Streeting added: “My heart goes out to Jesy Nelson.
Her bravery in speaking about this frightening situation will resonate with other parents facing similar challenges.
She’s pushed us to go further, and she is right to do so.”
The Bigger Picture
Jesy Nelson’s experience is sparking a crucial conversation about disability, medical screening, and media representation.
Advocates like Sophie Morgan stress that discussions about disabled lives must be informed by lived experience to truly understand the complexities involved.
Meanwhile, parents and supporters are hoping that this spotlight will drive policy changes to ensure every child in the UK has the chance for early treatment and better outcomes.
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