Jesy Nelson Shares Emotional Update After Her Twin Girls Receive Rare Genetic Diagnosis

In a raw and tearful video shared on Instagram, the former Little Mix singer detailed her family's harrowing journey through medical appointments, hospital stays, and emergency treatment, while urging other parents to be aware of the early signs of the disease.

Jesy Nelson has delivered a heartbreaking update about her twin daughters, revealing they've both been diagnosed with a rare and life-limiting condition just eight months after their birth.

In a deeply emotional video posted on Instagram on January 4, 2026, Nelson, 34, shared that her girls, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1 — a severe genetic disorder that affects muscle strength and movement.

However, after what she called an "endless" stream of hospital appointments, the devastating truth came to light.

The incurable condition causes the progressive loss of motor neurons, leading to muscle wasting and, in the most serious cases, respiratory failure.

Fighting back tears, Nelson described the journey as "the most gruelling three, four months" of her life. She revealed that it was her mother who first noticed that something wasn't right, flagging that the babies weren't moving as much as expected.

Nelson and her partner, Zion Foster, also became concerned when the girls struggled to feed properly. But reassurances from health visitors and GPs suggested that, because the babies were born prematurely, they might simply be delayed in meeting developmental milestones.

However, after what she called an "endless" stream of hospital appointments, the devastating truth came to light. The singer revealed, visibly choked up:

"Once the girls got treated, it was a very rapid process because time is of the essence with this disease."

Treatment was quickly initiated at Great Ormond Street Hospital in London — one of the UK's leading children's medical centres.

Nelson said she was "so grateful" the twins had already begun receiving therapy, making it clear just how critical early intervention is with SMA. "Without it, they will die," she stated bluntly, underlining the severity of the diagnosis.

The singer also spoke candidly about the toll the experience has taken on her family life. She called the hospital her "second home" and admitted she had been forced to take on the role of a nurse, learning to operate breathing machines and manage medical routines most parents will never face.

Despite the bleak outlook, Nelson expressed a deep sense of hope.

"It's stuff that no mother should have to do with their child," the former Little Mix star shared. As for SMA Type 1, it affects every muscle in the body, including those needed for movement, breathing, and swallowing.

Nelson explained that doctors warned the girls would likely never walk or regain neck control. "They will be disabled," she revealed, adding that the best hope now is ongoing treatment and a positive mindset.

"If it's not treated in time, your baby's life expectancy will not make it past the age of two," she said tearfully. "I almost feel like I'm grieving a life I thought I was going to have with my children."

Despite the bleak outlook, Nelson expressed a deep sense of hope. "I truly believe my girls will defy all the odds with the right help and do things that have never been done," she declared, speaking directly to parents navigating similar experiences.

She concluded the video with a call to raise awareness about the disease, urging for earlier screening and better understanding of warning signs. These, she said, include floppiness in babies, rapid breathing, and bell-shaped bellies.

She also stressed the importance of the heel prick test at birth — a simple screening that, she believes, could be life-changing. The singer added:

"I just think that if I can raise as much awareness about this as possible and the signs, then, you know, something good has to come out of this."

In response to her video, many took to social media to offer support, encouragement, and heartfelt reflections. One person typed, "Life can be so pointlessly cruel, with no rhyme nor reason. I wish you well and a strong and happy future, no matter what!"

Another shared, "Don't give up on your beautiful babies god sent them to you for a reason ❤️❤️ [sic]." A separate commenter offered a message of strength, writing, "Such heartbreaking news stay strong for each other sending heart felt love ❤️😢 [sic]."

Reflecting on their own experiences, one individual commented, "You never know drs not always correct on what will happen, some disabled get told they won't walk etc but at times they give you the negative or worst case scenario [sic]."

"My parent were given this when I had a head injury as a child, won't walk or talk etc. they were wrong. Just have to take it one day at a time. No one knows until they grow, At the moment enjoy being a mum of two babies. What will be will be. Enjoy the cuddles etc [sic]," they continued.

However, some responses took a more sobering tone. One person said, "I hope those children's suffering will be as limited as possible. I also hope that at least such stories will finally make people realise that with a pregnancy/having children, all sorts of things can happen – and having multiples means that some risks are increased."

The netizen added, "If you're not ready to, e.g., have a severely ill or disabled or neurodivergent child, if you can't make sure your children would – if needed – have high-quality care for life, don't have children."

Nelson welcomed her twins on May 15, 2025, following a difficult pregnancy that required repeated hospitalisation. The twins arrived prematurely at just 31 weeks and spent time in the neonatal intensive care unit.

Now, eight months on, her message is one of fierce advocacy and quiet strength — a mother determined to give her daughters the best possible chance at life, however uncertain the path ahead.