A Bittersweet Update on SMA Screening in England
Jesy Nelson, a 34-year-old singer, has shared a bittersweet update regarding the screening for Spinal Muscular Atrophy (SMA) in England. She highlighted that it is essentially a “postcode lottery” whether a baby gets tested for this rare muscle-wasting condition.
In January, Jesy revealed that her now nine-month-old twins, Ocean and Story, were diagnosed with SMA Type 1. This condition means they may never be able to walk and will require specialist equipment to help them breathe at night, as well as feeding tubes.
Despite the UK’s National Screening Committee rejecting calls to introduce checks for another muscular disease in January, Wes Streeting announced plans for more than 400,000 babies to be screened for SMA from October 2026. However, in a new update, Jesy explained that only certain areas in England will be carrying out the tests on newborns.
“It is bit bittersweet because basically they are only doing it in certain areas of England, so if you do not live in that certain postcode or part of England then your baby won’t be tested for SMA, which is really sad,” she said.
“It’s essentially a postcode lottery for your baby which shouldn’t be the case. All babies lives matter, so as amazing as it is there is still a long way to go in terms of that.”
Jesy expressed her determination to continue pushing for SMA screening to be available across all areas of England. She also mentioned that the petition signed by her fans, which reached 100,000 signatures, is now going to be debated in parliament.
“That is all down to you guys so thank you so so much, you’re incredible and I am so appreciated of all the support and love, thank you so much.”
At the start of the video, Jesy celebrated a “major milestone” and said she is “really proud” of how far the campaign has come. She explained that she has been campaigning to get SMA included in the newborn screening in England. Her daughters were diagnosed with SMA Type 1, and unfortunately, they weren’t tested at birth because it wasn’t available in England.
“They have now decided to roll that out in October for all babies in England to be tested at birth for SMA, which is absolutely incredible.”
She added that this is a real proud moment for the SMA community, as this has been a long-standing effort to get this passed. The pilot will see an estimated 400,000 babies tested in England. The NHS currently carries out “heel prick” tests on babies at around five-days-old to check for just 10 treatable conditions, including cystic fibrosis.
In a letter addressed to Jesy and Giles Lomax, chief executive of SMA UK, Streeting said: “At our meeting I committed to seeing whether the in-service evaluation of SMA screening could be implemented faster and cover a wider geographical areas. I am pleased to confirm that [screening] will now start in October this year rather than January 2025 as previously planned.”
Despite her nine-month-old daughters’ devastating prognosis, which suggests they may not live beyond the age of two, Jesy last month explained that she has decided to keep filming her Prime Video series as she fights to “make a change”.
In a Q&A, she said: “I just hope people continue to watch the next part of the journey. When the girls got their diagnosis, we decided that we wanted to continue filming. As hard as it was, we were like, ‘You know what? There’s a reason you guys are here, and we’ve got to make the best out of this situation’.”
Jesy previously told the Daily Mail that the medical procedures her babies must endure each day leave her feeling like she’s hurting them as they cry and scream. She described caring for the twins as an emotional rollercoaster, with some days being “really fing s” and others slightly lighter.
Jesy and her ex-partner Zion never expected to be caring for their babies in such a way, and Jesy says having to provide for their medical needs is a daily struggle. She said: “Every day is so full-on – I can speak about it, but I’ll never be able to explain how intense it is until you see it.”
Speaking to Jamie Laing on his Great Company podcast, Jesy said she is hopeful that her babies will defy the odds now that they are receiving treatment and go on to have a longer life expectancy.
She explained: “So spinal muscular atrophy is a muscular wasting disease, so they don’t have a gene that we all have in our body. Their muscles are now deteriorating and wasting away, and if you don’t get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two. It’s not okay, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation… And my girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds.”
