Former Little Mix singer Jesy Nelson has shared a devastating health update concerning her infant twin daughters, revealing they have been diagnosed with a severe genetic illness. The 34-year-old artist confirmed that her babies, Ocean Jade and Story Monroe Nelson-Foster, have Spinal Muscular Atrophy (SMA) Type 1, the most acute form of the muscle-wasting disease.
The Critical Importance of Early SMA Diagnosis
Spinal Muscular Atrophy is a rare genetic disorder that progressively weakens muscles, affecting movement, breathing, and swallowing. Time is of the essence for treatment, with interventions needing to start within the first weeks or even days of life to prevent irreversible damage. Before 2019, many babies with SMA Type 1 did not survive beyond their second birthday.
Jesy Nelson explained that her mother first noticed the twins were not moving their legs as expected. Initially reassured by healthcare visitors that slower development was normal for premature babies, Jesy's concerns grew when the girls struggled to feed. After three to four months of gruelling appointments, the family received the SMA diagnosis at Great Ormond Street Hospital.
The UK Screening Gap and Private Testing Options
Currently, newborns in the UK are not routinely screened for SMA via the NHS, meaning diagnoses often come too late for optimal treatment. A pilot programme for universal screening is due to begin in Scotland in 2026. Campaigners, including Portia Thorman from SMA UK, argue it is "ethically wrong" not to roll out testing across the entire UK.
In the interim, parents seeking early testing must explore private avenues. Costs vary significantly:
- Private Blood Tests London: Offers an SMN1 test for £924, with results in 10 days and no GP referral needed.
- Synnovis: Provides a similar test for £413, arranged through an NHS hospital, with a faster 3-day turnaround.
- Medical Express Clinic on Harley Street: Charges £567 for results within 10 days.
Experts strongly advise parents to contact SMA UK and their treating hospital for guidance, as not all private tests are suitable for newborns.
Life After Diagnosis: Treatment and Hope
Jesy Nelson described the last few months as the "most heartbreaking time" of her life, stating she is "grieving a life I thought I was going to have with my children." Doctors informed her that her daughters would likely never walk or regain full neck strength, saying "they will be disabled."
However, there is hope. The twins have now received one of the NHS-approved treatments available since 2019, which can halt the disease's progression. Jesy expressed immense gratitude for this treatment, stating plainly, "If they didn’t have it they would die." While there is no cure, these therapies aim to ensure the best possible quality of life.
The condition occurs when both parents carry a faulty gene, with approximately one in 40 people being a carrier. Jesy concluded her emotional video message with a determined note of hope, saying she believes her girls will defy the odds with the right help.
