Jesy Nelson says she has ‘duty of care’ to help others after twins’ diagnosis

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.”

Nelson added: “They’ve had treatment now, thank God, that is a one-off infusion.

“It essentially puts the gene back in their body that they don’t have and it stops any of the muscles that are still working from dying. But any that have gone, you can’t regain them back.

“I just want to reiterate that if this is caught from birth, it’s just life-changing.”

The singer said she had noticed signs before knowing what SMA1 was, however, did not think much of it because she had been told not to compare the twins’ development to others because they were premature.

She said: “That’s also quite alarming as well. When you’ve got healthcare visitors coming around, who are telling you, ‘oh they’re fine, they’re absolutely fine, they look healthy, they’re doing really well’ and it took for my mum to be like, they don’t move their legs how they should be moving.

“That is why it is so important and vital to get treatment from birth and it is detected from birth.”

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”.

Opening up about the twins’ future, Nelson said: “We’ve been told that they will probably never walk. They’ll probably never regain their neck strength. They are going to be in wheelchairs.

“There’s been so many stories where parents have been told this, and then their children have gone on to do incredible things so I believe that you’ve just got to manifest this into existence.

“They are still smiling. They’re still happy. They have each other and that’s like the main thing that I’m so grateful for because they could be doing this by themselves, but they’re twins, and they’re going through this together and I think that’s beautiful.

“All I can do is just try my best to be there for them, give them positive energy, keep doing physio.”

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.