Jesy Nelson has described the government's decision to screen all newborns in England for spinal muscular atrophy (SMA) as "bittersweet," as her own twin daughters face an uncertain future after a late diagnosis. The former Little Mix singer, 35, revealed that Ocean and Story, now six months old, are being tested every three months at Great Ormond Street Hospital to assess how much irreversible nerve damage has occurred. Doctors have told her they will likely never walk.
Campaign Victory After Personal Tragedy
Jesy lobbied the government and partnered with the Mirror to campaign for universal newborn SMA screening after her twins were diagnosed too late to prevent severe muscle wasting. The government announced the rollout in one of the final acts of Sir Keir Starmer's administration. From October, around two-thirds of babies in England will be tested, with full expansion by October 2027.
"It's just amazing and it's also a bit of a bittersweet feeling at the same time," Jesy told the Mirror. "It's hard because I don't want this to sound like I'm not grateful and happy about it. What has just happened is amazing but it's just sad that it also took for my story to get it to this place, to give it this push to get it over the line. If this had been taken seriously a few years ago, maybe my girls wouldn't be in this situation."
Understanding SMA and Its Impact
Around 50 children a year are born with SMA, caused by a faulty version of the SMN1 gene. This prevents production of a key protein that maintains motor neurons, which transmit signals between the brain, spinal cord, and muscles. Without it, these nerve cells die, and muscles—especially in the legs, chest, and arms—waste away. Babies with Type 1 SMA, the severe form Ocean and Story have, may eventually need breathing machines at night and tube feeding.
Jesy said the twins' three-month tests have shown declining motor neuron numbers. "I'll be honest with you, it's not been great with the girls. They have a three-month test… and their numbers went down. If there's no progress then they may have to go back on treatment so it's quite a scary time for me at the moment. The treatment is super new as well."
Treatment and Uncertain Prognosis
Ocean and Story were diagnosed at six months after repeated GP visits and health visitor checks. They received Zolgensma, a one-off gene therapy infusion that delivers a healthy copy of the SMN1 gene. If given soon after birth, it is effectively a cure. However, due to the late diagnosis, its effectiveness is uncertain. The twins may also need daily Evrysdi to boost SMN protein production.
Jesy explained: "[Zolgensma] is still life-changing and obviously it saves their life, you know. It stops them from bloody dying. But if they'd have got that from birth, then it would have been a whole different ball game. If you get it later on in life it's uncertain what the treatment will do. Not every baby is the same. Lots of babies have had positive outcomes, even if it's later, but not all do."
She added: "If you don't get that treatment from birth you don't know what muscles are dead and what can be saved. And unfortunately that is the problem with my girls at the moment. We don't know what is still working and what isn't and it's all just a bit of a guessing game at the moment… I'm just trying to be hopeful, but it's tough. It's really tough."
Documentary and Hope for Change
Jesy's journey is documented in the Prime Video film Jesy Nelson: Life Changing, released Friday. She said the screening victory means her daughters' story will be part of change. "To be honest, I feel like I haven't properly taken it in. It's just mad because I remember when I first got their diagnosis, obviously I was heartbroken, and I just knew that I wanted to make the best out of it in any way I could. I wanted to try and get this so they know when they're older, that their story was a part of change. That's going to be their little superpower."
She also thanked the Mirror, which has reported on the SMA testing scandal since 2021 and launched the campaign with Jesy. "It's an overwhelming feeling I can't really explain, to be honest. I just feel quite emotional. And I'm so grateful to the Mirror. When you go to your petrol garage, people that may not follow me on Instagram but they'll see the newspaper… and it's bringing so much awareness."
Aoife Regan, director at Great Ormond Street Hospital Charity, said: "We warmly welcome this announcement. At Great Ormond Street Hospital, teams provide specialist and wraparound care for children with SMA and their families following what is often a devastating diagnosis."
