Former Little Mix singer Jesy Nelson has announced plans to launch a campaign for universal screening of spinal muscular atrophy (SMA) at birth, following the diagnosis of her twin daughters with the rare genetic condition. The 34-year-old, who welcomed twins Ocean Jade and Story Monroe Nelson-Foster prematurely in May with her fiancé Zion Foster, revealed on Sunday that her babies have been diagnosed with SMA type 1.
In an Instagram post, Nelson confirmed her intention to start a petition advocating for SMA screening to be incorporated into the standard newborn heel prick test. She said she is 'determined to make this happen' and expressed profound gratitude for the 'outpour of support' received since sharing her twins' diagnosis.
Nelson said: 'Thank you genuinely so, so much from the bottom of my heart for just the outpour of support and beautiful messages, for me and so many other families that are dealing with this horrible diagnosis. I’m actually overwhelmed from the amount of support.' She added: 'I just want to say thank you to everyone that shared it, to everyone that wanted to take the time to learn about it, and everyone that’s sent me their beautiful messages.'
The NHS currently offers the newborn blood spot screening test to all babies at five days old, detecting nine rare but serious health conditions. While Scotland is set to begin SMA screening for babies this spring, the test is not yet routinely available elsewhere in the UK. Health Secretary Wes Streeting publicly backed Nelson’s initiative on Tuesday, telling ITV News she was 'right to challenge and criticise how long it takes to get a diagnosis'.
Nelson is scheduled to appear on ITV’s This Morning on Wednesday to discuss her experience. She rose to prominence after winning The X Factor in 2011 as part of Little Mix and departed the group in December 2020.
