has shared a heartbreaking statement about updates in screening for Spinal Muscular Atrophy (SMA) in babies.
The star, 34, welcomed her daughters Ocean and Story in May with her ex-fiancé, Zion Foster, and in January revealed that both babies had been diagnosed with the genetic neuromuscular disease.
The condition weakens the muscles by affecting the motor nerve cells in the spinal cord, and Type 1 is the most common and severe form, with life expectancy estimated at less than two years without medical intervention.
SMA can be identified in a heel prick test, however the condition is not currently included in the early checks - leading to Jesy lobbying for change and gaining over 100k signatures in a campaign to have the condition added.
On Monday it was announced Scotland would be the first part of the UK to introduce the testing, after which Jesy shared an Instagram story branding the news 'bittersweet' as the screening could have made her girls lives 'look so different'.
Jesy Nelson has shared a heartbreaking statement about updates in screening for Spinal Muscular Atrophy (SMA) in babies
The Little Mix star, 34, welcomed her daughters Ocean and Story in May with her ex-fiancé, Zion Foster, and in January revealed that both babies had been diagnosed with the genetic neuromuscular disease
On Monday it was announced Scotland would be the first part of the UK to introduce the testing, after which Jesy shared an Instagram story branding the news 'bittersweet' as the screening could have made her girls lives 'look so different'
She took to Instagram to share a statement reading: 'Today my heart feels super heavy. It's a very bitter sweet moment knowing that Scotland had become the first uk nation to screen babies for SMA...
'We're so close yet so far. I will never be able to understand why we still donot test for it here in England. To know that my girls lives and so many other children in England could look so different if this had of been here for them...
'But nevertheless I will keep fighting and pushing for change because nobody should ever have to go through this heartache.'
Ocean and Story have Spinal Muscular Atrophy Type 1 (SMA1), the rarest and most severe form of the condition.
Giles Lomax, the chief executive of the charity SMA UK, said the screening pilot in Scotland would be 'a huge impetus for other parts of the UK to speed up their own testing plans', saying: 'Every month another four babies are diagnosed with SMA and the clock is always ticking...
'With all three treatments now routinely available through NHS Scotland alongside newborn screening, the future for anyone diagnosed with SMA is very different compared to their peers who were diagnosed symptomatically...
'It basically gives children the life they deserve.'
Since sharing her twins' health battle, Jesy has openly documented the challenges of managing their diagnosis on social media, and in a new Instagram video, she revealed they will be using leg splints to flatten out their 'pointed' feet
Since sharing her twins' health battle, Jesy has openly documented the challenges of managing their diagnosis on social media, and in a new Instagram video, she revealed they will be using leg splints to flatten out their 'pointed' feet.
She told her followers that she was 'sad' to see her babies would need the splints, as it was another 'reminder' of their health struggles they were facing.
Jesy said: 'So today, I had to go pick up the girls' splints because their feet are pointing, and they need to be flattened out. It made me really sad.'
The star then showed the tiny leg splints her daughters would be wearing, with Story's covered in hearts while Ocean's had butterflies.
'Have you ever seen anything cuter in your life?' Jesy added as she held up the baby-sized splints for the camera, before sadly saying: 'Made me sad though, because it's just another reminder.'
Despite her nine-month-old daughters' devastating prognosis that 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 continued: 'I'm sure you guys are aware, like, I'm trying to get it [SMA] made part of the heel prick test. That's my main goal right now, as well as looking after my beautiful girls.
'I haven't even seen it back yet, but I already know it's going to be tough. But I'm just so happy that we've been able to document everything, because I really believe that we're going to make a change. Like, I feel it.
'I love how dedicated people are to spreading awareness about everything that I've been through, and this [programme] is going to shed even more.'
