Former Little Mix singer Jesy Nelson has been praised for her bravery after revealing her twin baby daughters have been diagnosed with a severe and rare genetic condition.
An Emotional Public Revelation
In a heartfelt video posted to Instagram, the 34-year-old singer shared that her twins, Ocean Jade and Story Monroe Nelson-Foster, are unlikely to ever walk. The babies were born prematurely in May to Nelson and her fiancé, Zion Foster.
Nelson explained that the girls have spinal muscular atrophy type 1 (SMA1), the most severe form of the muscle-wasting condition. "We were told that they’re probably never going to be able to walk," she said emotionally. "The last few months has honestly been the most heartbreaking time of my life."
The diagnosis came after Nelson's mother noticed the twins were not moving their legs as expected and they later had feeding difficulties. Nelson recounted that doctors initially dismissed concerns before the eventual SMA1 diagnosis was confirmed.
Charity Support and the Screening Campaign
Andy Fletcher, chief executive of Muscular Dystrophy UK, immediately offered support to the family. "Our thoughts are with Jesy and her family at this difficult time," he said. "We understand that receiving a diagnosis like this can be devastating."
Fletcher praised Nelson for "bravely" sharing her story to raise awareness of SMA. He emphasised the critical importance of newborn screening, calling it the "fastest and most effective route" to a diagnosis. Early detection is vital as treatments are most effective when administered quickly.
Currently, routine newborn screening for SMA is not available in England, Wales, or Northern Ireland, though Scotland has announced it will begin screening from spring 2026. The UK National Screening Committee is reassessing its position due to advances in treatment.
Understanding SMA and the Fight Ahead
Spinal muscular atrophy causes progressive muscle weakness and wasting. SMA1, which affects an estimated one in 10,000 babies globally, impacts breathing, swallowing, and movement. Without groundbreaking gene therapy treatment, most babies with SMA1 do not survive beyond two years.
"Thankfully, the girls have had their treatment which, you know, I’m so grateful for because if they don’t have it, they will die," Nelson stated. The family's life has since revolved around endless hospital appointments.
Despite the prognosis, Nelson expressed fierce hope. "I truly believe that my girls will fight all the odds," she said. Foster also shared a picture of the twins, captioning it: "Still smiling through all the challenges. Daddy loves you so much."
Nelson's pregnancy was already complicated by twin-to-twin transfusion syndrome (TTTS), a serious condition affecting identical twins who share a placenta. She documented this journey on social media before the twins' birth.
The singer, who rose to fame winning The X Factor with Little Mix in 2011, left the band in December 2020. She concluded her video with a urgent public message, urging any parent who sees similar signs in their child to seek immediate medical help, stressing that "time is of the essence."
