Jesy Nelson Reveals Twins’ Rare Condition and Future Challenges

Former Little Mix singer Jesy Nelson has shared emotional news about her 8-month-old twin daughters, revealing that both have been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1) — a rare, severe genetic condition affecting muscle strength and movement. The revelation has moved fans globally and sparked important conversations about early diagnosis, treatment, and fighting the odds. 

In a tearful video posted to Instagram, Jesy explained that medical professionals believe her daughters Ocean Jade and Story Monroe Nelson-Foster, may never walk or fully develop neck strength, but that they have already begun lifesaving treatment that gives them the best chance possible. 

A Joyful Birth With Early Challenges

Jesy, 34, and her fiancé Zion Foster welcomed the twins unexpectedly early on May 15, 2025, at just 31 weeks after a high-risk pregnancy complicated by twin-to-twin transfusion syndrome (TTTS). The newborns spent time in intensive care before coming home. 

At first, delays in muscle movement were attributed to prematurity — a common reality for babies born so early. But over months of hospital visits and tests, doctors identified the more serious underlying cause. 

What Is Spinal Muscular Atrophy (SMA) Type 1?

SMA Type 1 is the most severe form of spinal muscular atrophy, a genetic neuromuscular disorder that weakens muscles essential for walking, breathing, and swallowing. Symptoms often appear within the first months of life, and without prompt treatment, the condition can be life-threatening before age two. 

Jesy described how early signs — limited leg movement, difficulty feeding, and floppiness — were initially dismissed due to prematurity, a delay that many parents can relate to. She has used this experience to urge other families to trust their instincts and seek medical advice if they notice similar symptoms. 

The Reality vs the Hope

Doctors have told Jesy and Zion that their daughters may likely never walk or gain full neck strength, reflecting the severity of their diagnosis. Despite this prognosis, both girls have received treatment — including gene therapy that can dramatically alter SMA1 outcomes when given early — and are currently under medical care. 

Jesy described the early months as “the most heartbreaking time of my life,” acknowledging the emotional toll of adjusting expectations for her children’s future. Yet she also emphasized gratitude that the twins are still here, that they are receiving treatment, and that hope persists. 

“This is the best outcome we can hope for right now,” she said, adding that she believes her daughters will fight all the odds with the right support and care. 

Why Jesy Shared This Personal Story

Jesy said her motivation for speaking openly was not just to seek support, but to raise awareness — especially about early diagnosis of SMA and recognizing warning signs in infants. Time is critical with conditions like SMA Type 1: early detection and intervention can be life-saving.

Her message has clearly resonated, with many fans, fellow artists, and advocacy groups expressing support and sharing resources for genetic screening and treatment access.

A Community Response of Support and Solidarity

Since Jesy’s video was posted, messages of encouragement from fans and celebrities alike have poured in, reflecting widespread empathy. Many have applauded her courage in discussing such a personal and painful topic publicly, helping shine a spotlight on a condition many may not have heard of previously. 

Her fiancé Zion Foster also shared loving posts praising their daughters’ strength and his commitment to their journey, reminding followers that even in hardship, love can still be visible and deeply felt. 

While the road ahead for Ocean Jade and Story Monroe may be filled with medical challenges, Jesy and Zion’s decision to share their story has already ignited conversations about rare diseases, parental advocacy, and the importance of awareness and early treatment. Through openness and community support, what began as heartbreaking news has become a platform for hope and education.