SMA Type 1: Jesy Nelson says she feels 'duty of care' to help others

Former Little Mix singer Jesy Nelson has said she feels she has a “duty of care” to raise awareness about the rare genetic condition her twins have been diagnosed with.

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 a post 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 on Wednesday, the singer, who has 9.7 million followers on Instagram, said: “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.

“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.”

Nelson’s This Morning appearance came after she made an Instagram video earlier this week in which she said her mother had noticed the twins “were not showing as much movement in their legs as they should be”.

Nelson said when she first went to see doctors, they told her “don’t worry, it’s fine”, before the eventual diagnosis of SMA1, which the NHS says causes muscle weakness, movement problems, problems with breathing and swallowing, muscle tremors, and bone and joint problems.

In an Instagram post, Nelson said: “We were told that they’re probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled, and so the best thing we can do right now is to get them treatment, and then just hope for the best.

“Thankfully, the girls have had their treatment, which you know, I’m so grateful for because if they don’t have it, they will die.