Jesy Nelson starts petition for SMA test after twins diagnosed

Jesy Nelson, the former Little Mix singer, has announced she will launch a campaign for universal SMA1 (spinal muscular atrophy) screening 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 the severe muscular disease.

In a subsequent Instagram post, Nelson confirmed her intention to start a petition advocating for SMA screening to be incorporated into the standard newborn heel prick test, stating she is "determined to make this happen".

The singer expressed profound gratitude for the "outpour of support" received since sharing her twins’ diagnosis over the weekend.

She 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 continued, extending her thanks: "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. Thank you from me and the SMA community. We just appreciate it so, so much."

Nelson reiterated her commitment to campaigning for the condition’s inclusion in the newborn blood spot screening test. The NHS website explains this test is offered to all babies at five days old, using a blood sample to detect 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.

Addressing her followers, Nelson stated: "I just want to let you guys know, I am starting a petition to try and get SMA on the newborn screening heel prick test from birth. I just want you to know that I am so determined to make this happen. I’m going to fight as much as I can to make this part of the screening." She added that the matter is "currently under review".

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 also scheduled to appear on ITV’s This Morning on Wednesday to discuss her experience with "two beautiful baby girls with SMA1 and what that’s like".

Concluding her video, Nelson blew a kiss and told her followers: "Love you all so, so much. I can’t thank you enough for all the support. We’ve got a long way to go and I appreciate you all so much."

Nelson rose to prominence after winning The X Factor in 2011 as part of Little Mix, alongside Leigh-Anne Pinnock, Perrie Edwards, and Jade Thirlwall. She departed the group in December 2020 and has since released two solo singles, ‘Boyz’ in 2021 and ‘Bad Thing’ in 2023.