Former Little Mix star Jesy Nelson has described her feelings as "bittersweet" following Scotland's decision to become the first UK nation to screen babies for a rare muscle disease affecting her daughters.
Earlier this year, the 34-year-old announced that her twin girls, Ocean Jade and Story Monroe Nelson, had been diagnosed with spinal muscular atrophy (SMA), a genetic condition leading to progressive muscle wastage.
Since then, Nelson has actively campaigned for universal newborn screening, highlighting how early treatment can prevent some of the most devastating impacts of the illness.
In a post on her Instagram story on Monday, Nelson 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, problems with breathing and swallowing, muscle tremors, and bone and joint problems.
Nelson said in January that her daughters’ diagnosis would mean they are unlikely to ever be able to walk or regain their neck strength.
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.
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 Monday all parents in Scotland will be offered SMA screening for their newborns, on about day four after birth.
After Nelson’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.
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.
Nelson previously told the Press Association that she is not going to stop talking about her twin babies’ diagnosis until “something changes”.
Bluegrass music legend dies in motorcycle accident aged 64
Celine Dion set for comeback shows four years after Stiff Person Syndrome diagnosis
Singer Catherine Harding speaks out over Chappell Roan incident with her daughter
Catherine Harding praises Lewis Capaldi’s kindness after Chappell Roan controversy
Moby slammed by Dave Davies for calling The Kinks’ song Lola ‘transphobic’
Raye’s dazzling second album will have you screaming for an encore – review
