Jesy Nelson has shared a bittersweet SMA update on Friday as she revealed it is a ‘postcode lottery’ whether your baby gets tested.

The singer, 34, revealed in January her now nine-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition.

The late diagnosis means her daughters are likely to never be able to walk and have 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, on Wednesday Wes Streeting announced plans for more than 400,000 babies to be screened for the condition from October 2026.

However in a new update, Jesy told fans there is a long way to go as 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 explained.

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Jesy Nelson has shared a bittersweet SMA update on Friday as she revealed it is a ‘postcode lottery’ whether your baby gets tested

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The singer, 34, revealed in January her now nine-month-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition

‘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.

‘I’m going to keep pushing and trying as much as possible to get this so it is in all areas of England and then also the petition you all kindly signed getting 100,000 signatures is now going to be debated in parliament which is just amazing.

‘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 the ‘major milestone’ and said she is ‘really proud’ how far the campaign has come.

She said: ‘I just wanted to come on here to share some information and news that I have heard over the last couple of days.

‘As you know I’ve been campaigning to try and get SMA as part of the newborn screening here in England. My girls were diagnosed with SMA Type 1 and unfortunately they weren’t tested at birth because it wasn’t here 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.

‘I know it is a really big moment for the SMA community because this has been going on for years trying to get this passed, so yeah it is a real proud moment.’

The singer has campaigned tirelessly for the NHS to expand its screening to check for spinal muscular atrophy following her own experience with her daughters.

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.

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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 the condition from October 2026

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 they may not live beyond the age of two, Jesy last month explained that despite the tragic news, 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 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 f***ing s***’ and others slightly lighter.

Jesy and 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.

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‘It’s bittersweet because basically they are only doing it in certain areas of England, so if you do not live in that certain postcode then your baby won’t be tested for SMA, which is really sad’

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‘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’, she said

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.’