JESY NELSON CELEBRATES MAJOR VICTORY: SMA testing set for Parliament debate after twin daughters’ heartbreaking diagnosis

Jesy Nelson has celebrated a major milestone as she announced Spinal Muscular Atrophy (SMA) will now be debated in Parliament.

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

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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.

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.

On Friday, Jesy shared the news that the UK Government has confirmed that the petition to add SMA to newborn screening in England will now be debated in Parliament on 22 June.

The news comes following calls demanding the   health secretary to overrule the committee’s guidance and make effective treatment more accessible on the NHS.

Jesy Nelson has celebrated a major milestone as she announced Spinal Muscular Atrophy (SMA) will now be debated in Parliament

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

Health

Health

On Friday, Jesy shared the news that the UK government has confirmed that the petition to add SMA to newborn screening in England will now be debated in Parliament on 22 June

Last month, Jesy shared her joy as the NHS announced they would roll out ‘heel prick’ testing on newborns for SMA.

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.

Celebrating the news, Jesy took to her Instagram and wrote: ‘A big step forward for SMA, ISE have announced to start screening for SMA in England will now begin in October 2026. I am so proud as this is a major milestone for the SMA community’.

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 the singer 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 daughters’ devastating prognosis they may not live beyond the age of two, Jesy in March 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”.’

Last month, Jesy shared her joy as the NHS announced they would roll out ‘heel prick’ testing on newborns for SMA

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.

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.’

What is spinal muscular atrophy?

Spinal Muscular Atrophy (SMA) is a disease that weakens a patient’s strength by affecting the motor neuron cells in the spinal cord.

It results in gradual muscle wasting and the severity of symptoms varies by type.

Type 1 SMA is the most severe and is evident at birth. The weakening of muscles means sufferers cannot sit and usually leads to death by the age of five.

Type 2 is intermediate with the sufferer being unable to stand.

Type 3 is mild and makes it difficult to get up from a sitting position.

Type 4 sufferers don’t have symptoms until they are in their 20s or 30s.