Jesy Nelson petitions Parliament and joins Mirror marketing campaign on SMA infants
Jesy Nelson says ‘I’m really proud to be working alongside the Mirror and SMA UK’ as she launches petition in Parliament for newborn screening for SMA
Jesy Nelson is confronting Wes Streeting over the lack of newborn screening for SMA in the UK
Jesy Nelson is today launching a petition with Parliament demanding all babies are checked for spinal muscular atrophy as she backs the Mirror campaign.
The former Little Mix singer’s twins have the devastating muscle wasting disease and have been told they will never walk – but a £5 blood test at birth would have prevented this. Jesy, 34, is today joining forces with the Mirror and charity SMA UK to demand a blood test for SMA to be added to the NHS heel prick test given to all newborns.
She said: “I’m really proud to be working alongside the Mirror and SMA UK on this campaign and launching this petition. This is something that means a lot to me personally, and I’m passionate about using my platform to raise awareness, support families affected, and help drive real change. Partnering with organisations who care so deeply about this makes it even more special to be part of.”
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Three treatments currently available on the NHS can either correct the faulty gene or provide a replacement for the key protein so that muscles do not die off. They are effectively a cure – but only if administered at birth before irreversible muscle damage.
Jesy has spoken publicly about how her girls were diagnosed with the condition only at six months, despite repeated visits to the GP and healthcare visitors checking in on them.
Babies not diagnosed and treated soon after birth can need a wheelchair and sometimes a machine to help them breath and feeding via a tube directly into their stomach.
Current plans for an NHS pilot would see one third of newborns in England – around 163,000 a year – not be tested so they can act as the “control group” to compare outcomes with to see how effective newborn screening for SMA is – a decision experts have branded “unethical”.
Jesy gave birth to twins Ocean Jade and Story Monroe Nelson-Foster prematurely in May with fiance Zion Foster, and Nelson has been posting about their journey on Instagram to raise awareness of the rare genetic condition ever since.
She said in a post: “As you all know, I’ve been working hard to campaign for SMA to be added to the newborn screening heel-prick test here in the UK. I’m so happy and proud to finally share that my petition is now live. Any support, shares or signatures would mean the world to me and to so many other families.”
The petition has achieved more than 6,000 signatures at the time of writing, with the Government required to respond to it if it reaches 10,000 signatures, and Parliament required to debate it if it amasses 100,000 signatures.
