Former Little Mix singer Jesy Nelson has shared the devastating news that her eight-month-old twin daughters have been diagnosed with a severe genetic muscle-wasting disease, after medical professionals initially dismissed her early concerns.
A Mother's Heartbreaking Diagnosis
Jesy Nelson, who welcomed her daughters Ocean Jade and Story Monroe prematurely at 31 weeks in May last year with fiancé Zion Foster, described the last few months as "the most heartbreaking time of my life." Speaking to her followers in an emotional video, the singer revealed the twins have Spinal Muscular Atrophy (SMA) type 1, the most severe form of the rare disease.
She explained that her own mother first noticed the babies "were not showing as much movement in their legs" as expected. However, Jesy said she was initially reassured by medical advice not to compare her premature daughters to other infants. "From the minute I left NICU (Neonatal Intensive Care Unit), I was told 'your babies are premature, so do not compare your babies to other babies,'" she recounted.
The Fight for Treatment and a Future
After months of tests and assessments at London's Great Ormond Street Hospital, the devastating diagnosis was confirmed. Jesy revealed that without urgent treatment, her girls could die before the age of two. The condition causes progressive muscle weakness, affecting swallowing, breathing, and movement.
"We were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled," Jesy said, fighting back tears. "I am grieving a life I thought I was going to have with my children." She detailed how her life has been upended, with the hospital becoming a second home and forcing her to take on nursing duties for her daughters.
Thankfully, the twins have now received a crucial treatment. "If they didn't have it they would die," Jesy stated, adding, "I truly believe that my girls will defy the odds."
The UK Screening Debate
The case highlights an ongoing campaign in the UK regarding newborn screening for SMA. While treatments exist that can halt the disease's progression, they are most effective when administered within the first weeks of life. Currently, babies in the UK are not routinely tested for SMA, unlike in Scotland where a pilot programme is due to start in 2026.
Portia Thorman from SMA UK said it would be "'ethically wrong' not to introduce screening throughout the UK." Prior to 2019, most babies with SMA type 1 did not survive to their second birthday, but modern treatments have transformed outcomes if given early.
Jesy's pregnancy was already complicated, involving surgery for twin-to-twin transfusion syndrome (TTTS) and a 10-week hospital stay before the girls' premature birth on 15 May. Her partner, Zion Foster, who proposed in September, shared a message of hope, calling the twins "smiling through the challenges." The family has received an outpouring of support from fans and celebrities alike as they face this immense challenge.
