Jesy Nelson, former Little Mix star and first-time mother, bravely spoke about the heartbreaking early warning signs she noticed in her twin daughters, who have been diagnosed with Spinal Muscular Atrophy (SMA). On the 7 January episode of ITV’s This Morning, Jesy appeared alongside hosts Ben Shephard and Cat Deeley to share her emotional story and raise awareness about the condition.
Just last week, Jesy revealed in a moving video that her eight-month-old premature twins are battling SMA, a progressive muscle-wasting disease that seriously affects mobility. The singer uses her platform to highlight the urgency of early detection and treatment, advocating for improved screening to help other families facing similar challenges.
Jesy explained the motivation behind sharing her experience publicly. “If I had seen someone else’s video, maybe, just maybe, I could have caught it early and prevented this from happening,” she said. She emphasized her responsibility to “shout from the rooftops” to ensure this message reaches as many people as possible.
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The diagnosis came as a shock, with doctors warning that her daughters may never walk due to the severity of their condition. SMA can be detected at birth through a heel prick test, which is not currently standard procedure on the NHS—a gap Jesy aims to address through her campaign.
Reflecting on the early signs, Jesy recounted, “After leaving Neonatal Intensive Care, I was told not to compare their development to other babies because they were premature. But I noticed their movements were different—I saw their legs moving less and less over time. Their belly shape and breathing patterns seemed unusual, but all I heard was reassurance from professionals that they were fine.”
Jesy’s mother also noticed the lack of leg movement and voiced concerns early on. “It’s frustrating because these signs were there, but they were attributed to prematurity,” Jesy shared. Reviewing home videos, she observed a rapid decline in her babies' leg movements within just a few weeks, highlighting the critical importance of early intervention.
The NHS describes SMA as a genetic condition causing muscle weakness that worsens over time, although it does not affect intelligence. Treatments exist to manage symptoms, but early diagnosis is essential for the best outcome.
Jesy provided an update on her twins' treatment: “They’ve had a one-off infusion that puts the missing gene back into their bodies. It stops further muscle loss, but unfortunately, muscle that’s already gone can’t be restored. Now, it’s all about ongoing physiotherapy.”
Despite doctors’ somber predictions—that her daughters may never walk or regain neck strength, and will likely need wheelchairs—Jesy remains hopeful. “There are many stories of children defying expectations, so I’m choosing to believe in miracles.”
Life has dramatically changed for Jesy and her family. “My home feels like a hospital now—medical equipment fills the hallway. One of the twins is on a breathing machine at night, and both have feeding tubes. I had to learn how to manage all this in just a few days.”
Fighting back tears, Jesy confessed, “I’m still struggling. I want to be their mum, not their nurse. But I want to stress how life-changing early diagnosis is. While I may never fully accept this, I’m committed to doing my best for my daughters and pushing for change.”
Jesy’s powerful message shines a light on SMA and the vital importance of awareness, early detection, and support for families facing this rare condition.