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Former Little Mix singer Jesy Nelson has admitted it’s ‘bittersweet’ seeing progress being made in the fight for babies to be screened for spinal muscular atrophy (SMA).
It has been announced that Scotland will be the first part of the UK to screen babies for the rare muscle disease that Jesy’s daughters also have.
The 34-year-old star and her now ex-fiance, Zion Foster, announced earlier this year that her twins, Ocean Jade and Story Monroe, were diagnosed with the rare genetic condition known as SMA, which causes progressive muscle wasting.
She has since campaigned for all babies to be screened for it, as early treatment can help avoid some of the most devastating effects.
In a post on her Instagram Story on Monday, the Boyz hitmaker said: ‘Today my heart feels super heavy. It’s a very bittersweet 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 do not test for it here in England.’
According to the NHS, the condition causes muscle weakness, movement problems, breathing and swallowing difficulties, muscle tremors, and bone and joint problems.
Jesy said in January that her babies’ diagnosis would mean they are unlikely ever to be able to walk or regain their neck strength.
She has also previously said their prognosis means they are unlikely to make it to their third birthday, and in her newest update, revealed they had been fitted with leg splints to support their joints.
Her twins have had treatment, a one-off infusion that puts a missing gene back into their bodies to stop other muscles from dying; however, it does not help regain any muscles that have already died.
She continued: ‘To know that my girls lives and so many other children in England could look so different if this had been here for them.
‘But nevertheless I will keep fighting and pushing for change because nobody should ever have to go through this heartache.’
From today, all parents in Scotland will be offered SMA screening for their newborns, on about day four after birth.
After Jesy’s twins’ diagnosis, she launched a petition to get screening for SMA added to the newborn blood spot screening test, also known as the heel-prick test, which screens for serious health conditions.
The petition secured more than 100,000 signatures, which means it will be considered for a debate in the House of Commons.
Continuing her activism, she also became a patron of the charity Spinal Muscular Atrophy UK after meeting Health Secretary Wes Streeting earlier this year to speak about the life-changing impact early detection of the condition could have had on her twins.
Announcing her new role last month, the pop star wrote on social media that she felt ‘incredibly proud’ and it meant ‘so much to [her]’.
‘I’ve been deeply touched by the SMA community from the strength of the children, the resilience of the families, and the love that surrounds them every single day,’ Jesy penned.
‘I’ll be using my voice to keep raising awareness not only for my girls, but to support families going through the same experiences, and campaigning for the SMA test to be added to the newborn screening heel-prick test so more babies can get the help they need as early as possible.’
Jesy has made it known that she is ‘not going to stop’ talking about SMA until ‘something changes’ and has been inundated with well-wishes since taking Ocean and Story’s diagnoses public.
Symptoms of SMA
As explained by the NHS, symptoms of spinal muscular atrophy (SMA) affect everyone differently but can include:
muscle weakness – such as floppy or weak arms and legs movement problems – such as difficulty sitting up, crawling or walking problems with breathing or swallowing twitching or shaking muscles (tremors) bone and joint problems – such as an unusually curved spine (scoliosis)These symptoms are most often noticed in babies and toddlers, but they can also start in teenagers and adults.
SMA does not affect intelligence or cause learning disabilities.
This has included messages from her former bandmates, Leigh-Anne Pinnock, Perrie Edwards, and Jade Thirlwall, with Jesy admitting it has ‘healed’ her to be back in touch after several years of not speaking.
On The Smallzy Show, Leigh-Anne, who has her own twin daughters, said recently that she and the other two members ‘obviously’ all reached out to Jesy when the news broke in January.
‘I think she’s really incredible for spreading that awareness,’ the Don’t Say Love singer added.
Jesy also confirmed to Alison Hammond and Dermot O’Leary on This Morning that it was ‘lovely’ to hear from them.
‘They’re your sisters, aren’t they?’, Dermot asked.
‘Of course!’, Jesy agreed. ‘We were genuinely best friends, and things happen in life; it doesn’t always go how you think it’s going to, but three of us are mums now, I think we’ve all had time to heal; it’s been five, nearly six years, and I think it’s just one of those things that takes time.’
‘Who knows what will happen,’ she said of the possibility of reuniting, having left the group in 2020. ‘But since they’ve been reaching out, it’s lovely. It’s definitely healed a part of me, for sure.’
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