Imagine a parent's worst nightmare: learning your child has a devastating disease that could rob them of their ability to walk, or even their life. This is the heartbreaking reality Jesy Nelson, former Little Mix star, is facing after her twin daughters were diagnosed with Spinal Muscular Atrophy (SMA) Type 1. But here's where it gets even more heartbreaking: this diagnosis could have been caught earlier, potentially changing the course of her daughters' lives.
In an emotional Instagram post to her 9.7 million followers, Nelson expressed overwhelming gratitude as over 100,000 people signed her petition in just one day, advocating for SMA screening to be included in the newborn blood test (also known as the heel prick test). “I cannot actually put into words how grateful I am that this moment has just happened right here! And it is all thanks to you guys,” she shared, her relief palpable. “This is the first hurdle, but we bloody did it, and I truly believe that together we are going to make change!”
Earlier this year, Nelson bravely revealed her daughters’ diagnosis in a video, explaining that they were “probably never going to walk.” She detailed their struggles with leg movement and feeding, leading to months of grueling appointments and tests. “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 said, her voice heavy with emotion.
And this is the part most people miss: SMA is a progressive muscle-wasting disease that, if left untreated, can be fatal within two years. It affects movement, breathing, and swallowing, yet it’s often overlooked until irreversible damage has occurred. According to the NHS, SMA affects approximately one in 10,000 births, with Type 1 accounting for 60% of cases.
In a candid interview with ITV’s This Morning, Nelson explained why she felt compelled to share her story. “I felt selfish to keep this to myself and not potentially save a child’s life,” she said. “I have a duty of care to raise awareness for this condition.” Her advocacy extends beyond social media; last month, she met with Health Secretary Wes Streeting to discuss the life-altering impact early detection could have had on her twins.
The game-changer? A gene therapy drug called Zolgensma, approved by the NHS in 2021, can deliver a healthy copy of the affected gene to the body. But timing is critical. Here’s the controversy: Currently, SMA screening is only offered to babies with an affected sibling. Nelson’s petition, backed by SMA UK, aims to change this by adding SMA to the standard newborn screening test, which already checks for 10 rare but serious conditions.
The NHS describes the heel prick test as a routine procedure offered to every baby at five days old. Adding SMA to this test could mean earlier intervention and better outcomes for countless families.
Nelson, 34, who gave birth to her twins prematurely at 31 weeks, has been open about her pregnancy complications. In an October Instagram post, she celebrated her body’s strength, saying, “I’ve never felt prouder of my body following the birth of my girls. Becoming a mother made me realise how incredible my body actually is.”
Since leaving Little Mix in December 2020, Nelson has pursued a solo music career, releasing hits like Boyz featuring Nicki Minaj in 2021. But her current fight is far more personal—and far more important.
Here’s the question that lingers: Why isn’t SMA screening already standard practice? Is it a matter of resources, awareness, or something else entirely? Nelson’s petition has sparked a crucial conversation, but it’s one that needs your voice. Do you think SMA screening should be added to the newborn blood test? Let’s keep the dialogue going—because every child deserves a fighting chance.
