Jesy Nelson Says Staying Silent on Twins’ Diagnosis Would Have Been ‘Selfish’

Singer Jesy Nelson has said she felt a responsibility to speak publicly about her twins’ rare muscle disease diagnosis, explaining that keeping the news private would have felt selfish given the lack of routine testing for the condition at birth.

The former Little Mix star recently learned that her seven month old daughters have Spinal Muscular Atrophy, a genetic condition that affects muscle strength and movement. Nelson said doctors have told her the girls will probably never walk, a reality she described as heartbreaking but one she wants to confront openly to help other families.

Nelson said sharing the diagnosis was not about attention but about awareness. She explained that the condition is not currently included in standard newborn screening, meaning many families only find out after symptoms appear and valuable time for early intervention is lost. Speaking publicly, she said, was a way to push for change.

The singer pledged to “shout from the rooftops” in support of universal newborn testing for the disease, arguing that early diagnosis can make a profound difference to treatment options and long term outcomes. She said if her daughters had been tested at birth, the family might have had more time to prepare emotionally and medically.

Nelson described the moment she received the diagnosis as devastating. Like many parents, she said she had never heard of the condition before it entered her own life. The sudden shift from celebrating early milestones to confronting a lifelong medical reality left her feeling overwhelmed and frightened for her children’s future.

Despite the pain, Nelson said she was determined to be honest about the challenges ahead. She explained that pretending everything was fine would have added to the emotional burden and missed an opportunity to support other parents facing similar news. By speaking openly, she hopes to reduce stigma and isolation around rare diseases.

Advocates for expanded newborn screening say Nelson’s comments highlight a wider gap in public health policy. While some countries and regions have begun testing newborns for Spinal Muscular Atrophy, coverage remains inconsistent. Campaigners argue that as treatments improve, early detection becomes even more critical.

Nelson also spoke about the emotional complexity of parenting children with a serious condition in the public eye. She said she is protective of her daughters’ privacy but believes the issue itself is bigger than her family. Her focus, she said, is on ensuring that other babies have the best possible chance from the very start.

Fans and fellow artists have expressed support, praising her for her honesty and courage. Many parents shared their own experiences of delayed diagnoses, saying Nelson’s decision to speak out could help spare others similar uncertainty and distress.

Medical experts note that rare conditions often struggle for visibility, making celebrity advocacy particularly powerful. When public figures speak openly about personal health challenges, it can accelerate policy discussions and funding priorities that might otherwise take years to gain traction.

For Nelson, the campaign is deeply personal. She said her daughters have already taught her about resilience and unconditional love, even in the face of uncertainty. While the future may not look as she once imagined, she said she is committed to fighting for better awareness and earlier testing so other families are not left in the dark.

As she continues to navigate motherhood alongside advocacy, Nelson said one thing is clear. Staying silent would not have protected her children or others like them. Speaking out, she believes, is the only way to turn pain into purpose.