Former Little Mix singer Jesy Nelson has been praised by a leading charity for bravely sharing the news that her infant twin daughters have been diagnosed with a rare and severe genetic condition.
A Heartbreaking Diagnosis for the Family
In an emotional video posted on Instagram, the 34-year-old revealed that her prematurely born twins, Ocean Jade and Story Monroe Nelson-Foster, have spinal muscular atrophy type 1 (SMA1). Nelson explained that she and her fiancé, Zion Foster, were told the girls are unlikely to ever walk or regain full neck strength. "The best thing we can do right now is to get them treatment, and then just hope for the best," she said.
Nelson described the last few months as "the most heartbreaking time of my life," adding that she feels she is "grieving a life that I thought I was going to have with my children." The twins' diagnosis came after Nelson's mother noticed they were not moving their legs as expected and later began having feeding difficulties.
Charity Support and the Call for Newborn Screening
Andy Fletcher, chief executive of Muscular Dystrophy UK, offered the charity's full support to Nelson and her family. "We understand that receiving a diagnosis like this can be devastating," he stated. He thanked the singer for sharing her story to raise awareness of SMA and highlighted the critical importance of newborn screening.
SMA causes progressive muscle weakness and wasting. SMA type 1 is the most severe form; without groundbreaking gene therapy treatment, babies typically live for less than two years. An estimated 1 in 10,000 babies worldwide is born with a form of SMA.
Fletcher emphasised that newborn screening is the "fastest and most effective route" to a diagnosis, a time when treatments are most impactful. While Scotland has announced it will begin screening babies from spring 2026, it is not yet available across the rest of the UK. The UK National Screening Committee is currently reassessing its position due to treatment advances.
A Message of Hope and Awareness
Nelson, who experienced serious complications including twin-to-twin transfusion syndrome during her pregnancy, stressed that time is critical. She urged any parent noticing similar symptoms—such as floppiness, lack of head control, or movement difficulties—to seek medical help immediately. "The quicker you get this, the better their life will be," she pleaded.
Despite the challenges, Nelson expressed profound gratitude that her daughters have received their vital treatment. "I truly believe that my girls will fight all the odds," she said with hope. Fiancé Zion Foster also posted a picture of the twins, captioning it: "Still smiling through all the challenges. Daddy loves you so much."
By speaking out, Jesy Nelson has shone a public spotlight on this rare condition, championing the cause for universal newborn screening that could save and improve countless lives.
