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Former Little Mix star Jesy Nelson has said she’s been reduced to tears by her children being forced to wear spinal jackets and splints during the UK heatwave.
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.
“I cannot even begin to tell you how much this breaks my heart into a million pieces,” Nelson shared to her Instagram story as the heatwave intensified.
“But if I don’t put them in these every day, their spines and feet will only deteriorate and get worse.”
The singer noted that, although the apparatus will “never correct” her children’s spine or feet it will “only prevent it from getting any worse”.
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.
‘I’ve cried all day’: The singer has shared she became emotional due to the needless suffering her children have had to endure (Instagram @jesynelson)
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.
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“Once again, no future SMA babies need to suffer like this if they are given a heel prick test and treatment from birth!” the singer noted alongside photos of her daughters.
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.
Nelson has been campaigning for SMA screening to be added to newborn blood spot tests (PA)
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”.