Jesy Nelson Opens Up About Her Twin Daughters’ SMA Battle

Jesy Nelson’s voice breaks at one point in her Instagram video, and she tries to keep it together by pressing her fingers to her eyes. It occurs shortly after she describes what it’s like to learn that your infants, who are only eight months old, may never walk, raise their heads, or breathe on their own for extended periods of time. It isn’t theatrical. It’s incredibly real.

She appeared to be filming the video from a small area of her house, but everything about her seemed vulnerable. The message was unambiguous: I must say this. Not out of sympathy, but because it’s possible that other parents are looking for answers but don’t know what to look for.

Nelson, 34, did not become famous by hiding. He first won people over as a member of Little Mix. She has always been more than just a pop star because of her candor about mental health and the harsh realities of public life. This time, however, the vulnerability had nothing to do with tabloids or trolls. Her twin daughters, Ocean Jade and Story Monroe, were the subject of the heartbreaking diagnosis of spinal muscular atrophy type 1.

Children with SMA Type 1, an aggressive neuromuscular disorder that frequently manifests in infancy, lose their ability to move and have strong muscles. In its worst form, it interferes with breathing and swallowing. The majority of children with SMA Type 1 die before they turn two if they are not treated. Your stomach tightens just thinking about that.

Early indicators were subtle in Jesy’s case. The girls weren’t kicking as much as they should, according to her mother. They became difficult to feed. At first, doctors thought it was due to their premature birth at 31 weeks, which is fairly common. But the concern grew as the weeks went by and no milestones materialized.

Both girls had SMA Type 1, which is the answer no parent wants after four months of hospital stays and second opinions. No one who watches her video would question Jesy’s description of that time as the most heartbreaking time in her life. She acknowledged that she felt as though she was mourning the life she had imagined leading with her kids. It might never happen—a life of dancing, strolling, and running on the beach.

Her description of becoming a nurse practically overnight—managing medical procedures, learning equipment, and providing breathing support—was what most impressed me. She spoke with a heavy weariness veiled in intense love, but there was no trace of martyrdom.

Her statement, “This is something no mother should have to do,” caused me to pause because it’s so seldom acknowledged—that subtle identity shift that occurs when your child’s needs completely alter your day.

Zion Foster, her fiancé, shared a separate, modest, yet reassuring, tribute on social media: “Still smiling through all the challenges.” Daddy adores you dearly. He has been remarkably steady throughout the ordeal, especially as Jesy dealt with the diagnosis and the NICU stay.

Born in May 2025, the twins had already been through a lot. Twin-to-twin transfusion syndrome, a rare condition affecting shared placentas, complicated Jesy’s pregnancy. Before giving birth at just thirty-one weeks, she was hospitalized for ten weeks. She characterized the neonatal ward as a setting for which no parent is really ready. cables. beeping. tiny limbs in incubators made of plastic. She claimed that being unable to hold them broke her heart to pieces.

She was concentrating on getting better by the time they were released, but then the first indications of something more started to show.

Even though SMA is severe, it is treatable. However, the course of treatment is time-sensitive. There are disease-modifying medications and gene therapy, which can greatly improve the prognosis for certain infants, particularly those who receive an early diagnosis. As Jesy pointed out with tears in her eyes, the problem is that SMA is not included in the UK’s typical heel prick test. A lot of diagnoses are made too late.

She underlined that much of the harm might have been avoided if a heel prick test had identified it at birth. “If I can raise awareness about this, then something good has to come from it,” she said in a remarkably emotionally clear manner.

She expanded her story into something larger with that one sentence. It was more than just her. It dealt with all parents who may feel uneasy and are advised to wait it out. For people who are unable to identify their fear. She made a strong case for following your gut. Make a test push. When it comes to this illness, time is not neutral.

Nevertheless, Jesy resists giving in to hopelessness in spite of everything. “I genuinely think my girls will overcome all obstacles,” she remarked. Softly expressed, that belief seemed more powerful than any grandiose promise.

She spoke about body image and online bullying after winning The X Factor, and I recall seeing a similar look on her face in the early days of Little Mix. The same unvarnished candor, the same readiness to express discomfort in order to make others feel less isolated.

Since then, she has taken chances. moved away from the group. received criticism. regained her own voice. However, it feels different right now. Her career is no longer the focus. For two young children who have already gone through far too much, it is about survival, care, and hope.

She said that Ocean and Story had already started therapy. Great Ormond Street Hospital’s care team responded promptly. Breathing machines, feeding assistance, and physical therapy were all part of the quick and thorough response. They wasted no time at all because time was of the essence.

Jesy is aware that the prognosis is still unclear, though. However, her resolve remains unwavering. She has never been more clear about what is important.

She concluded her video by enumerating the early symptoms—floppy limbs, minimal leg movement, a frog-like posture, and difficulty feeding—that she wished she had identified earlier. She spoke with an almost shocking focus in the midst of the pain, a purpose that cut through the sadness.

Jesy Nelson did not decide to raise awareness of rare diseases as a spokesperson. But now that she is, she’s doing it urgently, compassionately, and most importantly, with the voice of a mother who won’t keep quiet.