Jesy Nelson steps up campaign at Downing Street after daughters diagnosed with rare condition

It has been a difficult few months for the singer after her twin daughters Ocean Jade and Story Monroe were diagnosed with SMA type 1 back in January.

The genetic condition causes progressive muscle wasting and the late diagnosis means her girls may never walk or regain their neck strength.

Ms Nelson has thrown herself into campaigning since then, launching a petition that's now gathered more than 100,000 signatures calling on the Government to include SMA in the newborn blood spot screening test.

Early detection is crucial because treatments can be highly effective when given soon after birth, which is why the singer has been pushing so hard for change.

She sat down with Health Secretary Wes Streeting just after their diagnosis in January to discuss how different things could have been for her daughters if the condition had been spotted earlier.

The following month, she took on the role of patron for SMA UK, the charity supporting families affected by the condition.

Working alongside the Daily Mirror and SMA UK, Ms Nelson launched a campaign calling for all newborns to receive a £5 test that could identify the condition early enough for life-changing treatment.

Mr Streeting responded by agreeing to bring forward a planned screening trial from January 2027 to October this year, with around 404,000 babies set to be tested in a phased rollout across England.

However, Ms Nelson criticised the decision to exclude 163,000 babies as a control group, calling it "literally a postcode lottery".

According to the NHS, SMA leads to muscle weakness, breathing and swallowing difficulties, muscle tremors, and problems with bones and joints.

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Ms Nelson's journey to motherhood was far from straightforward.

She experienced twin-to-twin transfusion syndrome during her pregnancy, a complication caused by abnormal blood vessel connections in the placenta that creates uneven blood flow between twins.

Her pregnancy struggles and life since leaving Little Mix have been documented in a six-part Prime Video series.

To make matters worse, Ms Nelson issued an urgent appeal for help over the weekend after her car was stolen from her Brentwood driveway, with vital hospital equipment for her daughters inside.

Ms Nelson shares twin daughters with her ex-fiancé, Zion Foster.

The former Little Mix star has since offered a £10,000 reward for any information leading to the recovery of the items.

She said thieves took her black Land Rover Defender at around 3am, sharing an appeal on Instagram urging anyone with information to come forward.

The vehicle, registration JJ73SSY, was last reportedly seen in Chelmsford.

Essex Police confirmed they were unable to comment on the reported theft.

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