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FORMER LITTLE MIX singer Jesy Nelson has revealed that her twin babies are unlikely to ever be able to walk after being diagnosed with a rare genetic condition.

The 34-year-old, who gave birth to twins Ocean Jade and Story Monroe Nelson-Foster prematurely in May with fiancé Zion Foster, has revealed they have been diagnosed with Spinal Muscular Atrophy Type 1 (SMA-1).

“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,” Nelson said in a video shared on Instagram on Sunday.

“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 I’m so grateful for because if they don’t have it, they will die.

“But it has just been endless, endless amounts of hospital appointments. I practically feel like the hospital has become my second home.”

Spinal Muscular Atrophy causes muscle wasting and weakness over time, leading to loss of movement. This can affect the ability to walk and crawl and can also impact breathing and swallowing.

An estimated one in 10,000 babies worldwide are born with a type of SMA, with SMA-1 the most common and severe form of the condition. Without treatment, which focuses on the altered genes that cause SMA, babies tend to live less than two years.

Symptoms include babies feeling floppy, being unable to raise their heads properly, not sitting and having difficulty moving, breathing and swallowing.

Nelson said the diagnosis was made after her mother noticed the twins “were not showing as much movement in their legs as they should be”, and they later began to struggle with feeding.

She said the last few months “has honestly been the most heartbreaking time of my life” and that she almost felt like she was “grieving a life that I thought I was going to have with my children”. 

“I truly believe that my girls will fight all the odds and, with the right help, they will fight this and go on to do things that have never been done.”

Heel prick test

Nelson said she had made her children’s diagnosis public as she wanted to raise awareness of the condition.

She said the condition can be detected from birth through the newborn screening test also known as the heel prick test, which takes some blood from a baby’s foot a few days after they are born.

However, she said the UK does not currently test for SMA as part of the test. 

“There’s many countries where it is tested at birth with just a simple heel prick, and I don’t think anyone understands just how much this can change your child’s life. It can literally save their legs, it can save so many parts of their body and essentially stop them from dying,” she said. 

In Ireland, the heel prick test currently involves testing newborns for nine rare but serious conditions. 

In November 2023, SMA was approved for inclusion in the heel prick test, something campaigners and advocates had long called for.

However, the test has yet to include SMA.

In June 2025, Health Minister Jennifer Carroll MacNeill told the Dáil that the HSE procured the equipment needed to enable the roll-out testing for SMA and that verification testing “is expected to commence shortly”.

She said Department of Health officials were engaging with the HSE “to ensure that progress continues on implementing an ambitious timeline for the introduction” of the screening without delay. 

Carroll MacNeill added that she is “acutely aware of how difficult it is for parents, families and children who have received a diagnosis of a rare disease, and how challenging daily life can be for them”.

“This is why I remain committed to the further expansion of screening in Ireland in accordance with internationally accepted criteria and best practice.”

‘Time is of the essence’

Nelson concluded her video by saying: “If anyone is watching this video and they think they see these signs in their child, then please take your child to the doctor, to the hospital, because time is of the essence and your child will need treatment.

“The quicker you get this, the better their life will be.”

She has been widely praised for sharing the diagnosis. 

Andy Fletcher, chief executive at Muscular Dystrophy UK, said: “Our thoughts are with Jesy and her family at this difficult time.

“We understand that receiving a diagnosis like this can be devastating. On behalf of everyone at Muscular Dystrophy UK and the wider community, please know that you’re not alone.

“We’d like to thank Jesy for sharing her story so bravely and helping to raise awareness of SMA and the importance of newborn screening.”

Nelson experienced a series of complications during her pregnancy, including twin-to-twin transfusion syndrome (TTTS), which she documented on social media.

The condition affects around 15% of identical twins who share a placenta. It is caused by abnormal connecting blood vessels in the placenta which leads to an imbalanced blood flow from one twin to the other, leaving one with a greater blood volume than the other.

One treatment involves using a laser to burn away the blood vessels in the placenta that are causing the unequal flow.

Nelson underwent the emergency procedure and spent 10 weeks in hospital before giving birth prematurely at 31 weeks on May 15.

With reporting from Press Association