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<\/p>\nFormer Little Mix singer Jesy Nelson has said she feels \u201cbittersweet\u201d after Scotland became the first part of the UK to screen babies for a rare muscle disease that her daughters have.<\/p>\n
Nelson, 34, announced earlier this year that her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with spinal muscular atrophy (SMA), a genetic condition which causes progressive muscle wastage.<\/p>\n
She has since campaigned for all babies to be screened, as early treatment can help avoid some of the most devastating effects of the condition.<\/p>\n
<\/p>\n
In a post on her Instagram story on Monday, Nelson said: \u201cToday my heart feels super heavy. It\u2019s a very bittersweet moment knowing that Scotland had become the first UK nation to screen babies for SMA.<\/p>\n
\u201cWe\u2019re so close yet so far.<\/p>\n
\u201cI will never be able to understand why we still do not test for it here in England.\u201d<\/p>\n
According to the NHS, the condition causes muscle weakness, movement problems, problems with breathing and swallowing, muscle tremors, and bone and joint problems.<\/p>\n
Nelson said in January that her daughters\u2019 diagnosis would mean they are unlikely to ever be able to walk or regain their neck strength.<\/p>\n
Her twins have had treatment, a one-off infusion that puts a missing gene back into their body to stop other muscles from dying, however, it does not help regain any muscles that have already died.<\/p>\n
She continued: \u201cTo know that my girls lives and so many other children in England could look so different if this had been here for them.<\/p>\n
\u201cBut nevertheless I will keep fighting and pushing for change because nobody should ever have to go through this heartache.\u201d<\/p>\n
From Monday all parents in Scotland will be offered SMA screening for their newborns, on about day four after birth.<\/p>\n
After Nelson\u2019s twins\u2019 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.<\/p>\n
The petition secured more than 100,000 signatures, which means it will be considered for a debate in the House of Commons.<\/p>\n
The singer also became a patron of 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.<\/p>\n
Nelson previously told the Press Association that she is not going to stop talking about her twin babies\u2019 diagnosis until \u201csomething changes\u201d.<\/p>\n
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