Jesy Nelson, formerly of Little Mix, has shared that her twin daughters have been diagnosed with Spinal Muscular Atrophy (SMA), a rare genetic condition that she says may prevent them from ever walking.
Nelson and musician Zion Foster welcomed Ocean Jade and Story Monroe Nelson-Foster in May of last year, prematurely.
In an Instagram video posted on Sunday, Nelson revealed the diagnosis, describing SMA as the “most severe muscular disease.”
“It does affect every muscle in the body, down to legs, arms, breathing, swallowing,” she explained.
In the video, Nelson detailed that her daughters exhibited less leg movement than expected and faced difficulties with feeding.
“After the most gruelling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA type 1,” she stated.
“Essentially, what it does is, over time, it kills the muscles to the body, and if it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
Nelson shared that the twins were evaluated at Great Ormond Street Hospital in London.
There, she was informed that her daughters were “probably never going to be able to walk. They probably will never regain their neck strength, so they will be disabled.”
She added that they have since received treatment, for which she expressed profound gratitude.
“Because if they don’t have it, they will die.”
Nelson also described taking on the role of a nurse, including using “breathing machines” for her daughters following the diagnosis.
“The reason I wanted to make this video was because the last three months have honestly been the most heartbreaking time of my life. I literally feel like my whole life has done a 360.”
Despite the challenges, she expressed her belief that her daughters would “defy all the odds” and, with the appropriate support, “they will fight this.”
She further explained her decision to share the diagnosis to raise awareness and encourage early diagnosis for other children.
Following Nelson’s announcement, Foster posted a photo of the twins smiling, with the caption: “Still smiling through all the challenges. Daddy loves you so much.”
Nelson, 34, gave birth to her twins prematurely at 31 weeks, having previously disclosed experiencing rare complications during her pregnancy.
In an October Instagram post, she conveyed that she had “never felt prouder” of her body after the birth of her daughters, stating that motherhood made her “realise how incredible my body actually is.”
Nelson departed from Little Mix in December 2020 and has since pursued a solo career, releasing the single “Boyz” featuring Nicki Minaj in 2021.
SMA is a progressive muscle-wasting disease that can be fatal within two years if left untreated.
In 2021, the NHS approved Zolgensma, a groundbreaking gene therapy drug, for the treatment of infants with the condition.
According to SMA UK, the medication introduces a healthy copy of the affected gene into the body; however, timely intervention is crucial due to the potential for irreversible damage to the nervous system.
Currently, SMA screening is limited to individuals with a sibling who has the condition.
SMA UK is advocating for the inclusion of SMA in the standard newborn blood spot test, which already screens for 10 rare but serious conditions.
The charity estimates that approximately 47 babies were born with SMA in the UK in 2024, with about one in 40 people carrying the gene that can cause the disease.
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