Former Little Mix singer Jesy Nelson has said she feels she has a “duty of care” to raise awareness of the rare genetic condition her twins have been diagnosed with and to help others catch it early.
The 34-year-old singer, who gave birth to twins Ocean Jade and Story Monroe Nelson-Foster prematurely in May with fiance Zion Foster, announced in on Sunday that the pair are unlikely to ever be able to walk after being diagnosed with SMA1 (spinal muscular atrophy).
She is now campaigning for SMA1 screening at birth and has started a petition to get the condition added to the newborn blood spot screening test, also known as the heel prick test.
Speaking on ITV’s This Morning, the singer, who has 9.7 million followers, said: “I have this platform, and I almost feel like I’ve got a duty of care to raise awareness about it.
“A little part of me feels – I don’t know if this is even crazy to say this – it feels selfish to keep this to myself and not potentially save a child’s life.”
According to the NHS website, the test is offered to every baby at five days old, and involves taking a blood sample to find out if it has one of nine rare but serious health conditions.
Speaking about the response since she revealed the news at the weekend, Nelson said: “I’m actually overwhelmed because I wanted it to get as much reach as possible, to raise awareness about it, and just the response I actually can’t believe how amazing the response has been.
“I could have prevented this from happening if I’d have seen a video and caught it early enough.”
She added: “When you know that there is something that can be done about it and it is life-changing to your child, that’s the part that I cannot accept and that is why I’m going to shout to the rooftops about this.”
Since the diagnosis, Nelson said her life has “completely changed”, and that her house looks like a hospital.
Appearing emotional, she said: “I just want to be their mum, I don’t want to be a nurse.
“I just want to reiterate that if this is caught from birth, it’s just life changing.”
Scotland has announced it will start screening babies for SMA from the spring, but the test is not currently available for newborns elsewhere in the UK.
On Tuesday, Health Secretary Wes Streeting told ITV news he backed the singer’s move to challenge the screening process for the rare genetic condition, and said she was “right to challenge and criticise how long it takes to get a diagnosis”.
Nelson rose to fame after winning The X Factor in 2011 with Little Mix alongside Leigh-Anne Pinnock, Perrie Edwards and Jade Thirlwall.
She left the band in December 2020 after nearly a decade together, and has since released two songs as a solo artist: Boyz, which featured US rapper Nicki Minaj, in 2021 and Bad Thing in 2023.
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