Jesy Nelson ‘bittersweet’ after Scotland becomes first to screen babies for SMA
The singer announced earlier this year that her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with spinal muscular atrophy.
Former Little Mix singer Jesy Nelson has said she feels “bittersweet” after Scotland became the first part of the UK to screen babies for a rare muscle disease that her daughters have.
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.
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.
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.
“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”.
