Former Little Mix star Jesy Nelson and her musician fiance, Zion Foster, have shared a devastating update on their twin daughters' health, revealing the infants have been diagnosed with a severe muscle-wasting disease.
A Father's Heartbreaking Tribute
In a poignant poem posted to Instagram, Zion Foster, 27, described his one-year-old daughters, Ocean Jade and Story Monroe Nelson-Foster, as "two little warrior girls who already know how to fight." The post comes after the couple revealed this month that the twins have Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the genetic condition.
Zion recounted the moment doctors delivered the prognosis, writing: "They said it's unlikely you'll walk, you may not be able to talk, probably won't be able to hold your head up. That's what me and Jesy heard." He expressed a profound shift in focus from developmental milestones to unconditional love, stating his deepest worry is about "accepting you, loving you for who you are right now, without conditions."
The 'Indefensible' NHS Screening Gap
Alongside his emotional tribute, Zion launched a fierce criticism of the UK's healthcare system, branding the absence of SMA from the routine NHS newborn heel prick test as "indefensible." This sentiment echoes a campaign by The Mirror, highlighting that most other developed nations already screen for SMA at birth.
Since 2019, the NHS has made three curative treatments available that can halt the death of motor neurons and stop SMA in its tracks. However, these treatments cannot reverse nerve damage already done, making early diagnosis via newborn screening critical to prevent permanent disability.
A recent Lancet study found that adding a simple £5 blood test for SMA to the existing newborn screening programme would save lives and be cost-effective for taxpayers. Despite this evidence, the UK government is not implementing a nationwide test.
A Postcode Lottery and a 2031 Timeline
Instead of a full rollout, ministers are following a recommendation from the UK National Screening Committee to first conduct an NHS pilot scheme. This pilot is unlikely to start before 2027, with a full UK-wide implementation potentially delayed until 2031.
This creates a stark postcode lottery. NHS Scotland has decided not to wait and is rolling out SMA screening for all newborns from spring 2026. Meanwhile, babies in parts of England and Wales will miss out during the pilot period.
Jesy Nelson, 34, whom Zion called a "superwoman" for tackling this "huge flaw" in the system, has said her "entire life has changed" since the diagnosis. The couple now face a future where their daughters may require feeding tubes, breathing machines, and overnight nursing care due to the progression of SMA Type 1.
The family's public struggle has thrown a national spotlight on the urgent need for the UK to catch up with global medical standards and implement a simple test that could change the lives of countless children.
