The Mirror has launched a campaign demanding the Government add a £5 blood test for spinal muscular atrophy (SMA) to the newborn heel prick test, following pop star Jesy Nelson's revelation that her twin babies were belatedly diagnosed with the severe Type 1 form of the condition. The former Little Mix star described on ITV's This Morning how her twins gradually lost the use of their legs in the first weeks of life, a tragedy she says could have been prevented with earlier treatment.
Jesy, 34, gave birth prematurely in May to twins Ocean Jade and Story Monroe Nelson-Foster with fiance Zion Foster. She said she will “never accept” that “we could have saved their legs” if a simple blood test had been available at birth. Gene therapies can now prevent paralysis if administered before irreversible damage occurs, but the NHS currently does not screen all newborns for SMA unless an older sibling has the condition.
The Mirror reported in 2024 that an estimated 50 babies a week are born with SMA in the UK, with most not diagnosed at birth. Pharmaceutical firm Novartis estimates 33 of these will end up in wheelchairs due to lack of newborn screening. Most other developed nations already include SMA testing in their newborn screening programmes.
Jesy said her twins are likely never to walk and will require wheelchairs, breathing support, and overnight nursing care. She remains hopeful, stating: “They are still smiling. They're still happy. They have each other.” The Mirror has highlighted SMA since 2021, noting the availability of gene therapy Zolgensma on the NHS, which can halt nerve cell death if given early.
