Little Mix star Jesy Nelson issues update after revealing twin girls' devastating SMA type 1 diagnosis
Nelson was flooded with well-wishes and now plans to take action to help other families
Emily Brown
Singer and mom-of-two Jesy Nelson has issued an update for her followers after announcing at the start of the year that her twin daughters had been diagnosed with a genetic condition called SMA type 1.
Nelson welcomed her twins, Ocean Jade and Story Monroe, with her fiancée Zion Foster in May 2025, but the former Little Mix star experienced complications when she was diagnosed with Twin-to-Twin Transfusion syndrome (TTTS), which happens when two babies share a placenta in the womb.
Nelson had to undergo surgery, after which Ocean and Story were born prematurely, and spent around four weeks in the NICU.
As 2026 got underway, Nelson then took to Instagram to announce that her daughters have SMA (Spinal Muscle Atrophy) type 1, saying it 'kills' the muscles in the body over time.
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"When they assessed the girls... we were told they were never going to be able to walk," Nelson said. "They would probably never regain their next strength. They will be disabled. The best thing we can do right now is to get them treatment and hope for the best."
Nelson was flooded with well-wishes and loving messages from fans in the wake of the news, and she has now shared an update on her Instagram Story.
Addressing her followers directly, Nelson said: "I just wanted to come on here to do another video to just basically say thank you, genuinely, so so much from the bottom of my heart for just the outpour[ing] of support and beautiful messages for me and just so many other families that are dealing with this horrible diagnosis."
Nelson went on to say she was 'overwhelmed' with the amount of support, before thanking anyone who's shared her story, sought to learn about SMA type 1, or sent 'their beautiful messages'.
"Thank you from me and also the SMA community, we just appreciate it so so much," Nelson said.
The singer then went on to reveal her plans to start a petition to try and get SMA on a newborn screening test from birth, adding: "I just need you to know that I am so determined to make this happen."
There is a genetic test available that can diagnose infants with SMA type 1, and involves using a tiny heel prick similar to routine newborn screenings. The blood is then analyzed in a lab for changes to the SMN1 gene which causes SMA Type 1.
While newborn screening for SMA, including SMA Type 1, is part of standard newborn screening in the United States, the condition is not yet part of the standard NHS newborn blood‑spot screening panel in the UK.
Nelson added: "So I'm going to fight as much as I can to make this happen, to make this part of the newborn screening. It's currently under review so I will keep you updated with that one."
After thanking her fans again, Nelson concluded: "We've got a long way to go and I appreciate you all so much."