Jesy Nelson Calls SMA Testing a Postcode Lottery

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 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.

'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.

'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'