Former Little Mix singer Jesy Nelson has bravely shared the devastating diagnosis of her nine-month-old twins, Ocean Jade and Story Monroe, with spinal muscular atrophy type one (SMA1), a genetic neuromuscular disease with a tragically short life expectancy. In a deeply emotional interview on Jamie Laing's Great Company podcast, the 34-year-old artist discussed the prognosis that her babies may not live beyond the age of two, while expressing unwavering hope that they will defy the odds.
The Cruel Reality of SMA Type One
Spinal muscular atrophy type one is a severe genetic condition that causes progressive muscle weakness and wasting due to the loss of motor neurons. Jesy explained the heartbreaking reality: "Their muscles are now deteriorating and wasting away, and if you don't get them treatment in time, eventually the muscles will all just die, which then affects the breathing, the swallowing, everything. And they will die before the age of two."
The singer, who recently separated from the twins' father Zion Foster, 26, acknowledged the painful acceptance required: "It's not okay, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation... And my girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds."
A Mother's Crusade for NHS Screening
Jesy has launched a passionate campaign demanding that the NHS expand its standard heel prick test to include screening for spinal muscular atrophy. With tests costing approximately £1 each, she believes early detection could have dramatically altered her daughters' prognosis. "They could have saved their legs with early treatment," she revealed, highlighting how crucial timing is for SMA interventions.
The twins' medical journey has been particularly complex, beginning with twin-to-twin transfusion syndrome (TTTS) during pregnancy, which affects a small percentage of identical twins sharing one placenta. Jesy remained hospitalised for three months before their premature birth at 31 weeks, describing how "95%" of untreated TTTS cases result in fatality.
From Pregnancy Challenges to Diagnosis
Jesy's pregnancy and early motherhood were marked by extraordinary challenges. She underwent an emergency C-section under general anaesthetic, feeling "robbed" of the birth experience. Her first sight of her daughters was through a plastic incubator with tubes and masks, unable to hold them for another day while they remained in special care for a month.
"That is one of the hardest things I've ever had to go through," Jesy recalled of being separated during their first week. "Every time I would come in, I would have to see another woman hold and look after my baby and it was just heartbreaking for me."
The Devastating Diagnosis Journey
The path to diagnosis began when Jesy's mother noticed the twins weren't moving their legs normally during a visit to their Cornwall home. Initially dismissing comparisons due to their prematurity, Jesy soon observed complete leg paralysis during nappy changes. Medical tests revealed hypertonia (poor muscle tone), and after private consultation and extensive research, SMA type one emerged as the likely culprit.
"The room started spinning like in the movies and I just knew in my heart that my babies had SMA type one," Jesy described the moment of realisation. A private paediatrician in London confirmed the severity: "Your children are practically paralysed from the waist down. I believe this is really serious."
Understanding Spinal Muscular Atrophy
Spinal Muscular Atrophy is a disease that weakens strength by affecting motor nerve cells in the spinal cord, resulting in gradual muscle wasting. Type 1 SMA, the most severe form evident at birth, typically prevents sitting and often leads to death by age five without intervention. However, when treated pre-symptomatically at or near birth, the disease can be largely prevented, with many children developing minimal or no symptoms.
Jesy has initiated a petition for universal newborn SMA screening and remains "determined and ready to fight" for its approval. Her advocacy highlights how early detection costing just £1 per test could transform outcomes for affected families across the UK.
Through her vulnerability and determination, Jesy Nelson has transformed personal tragedy into a powerful public health campaign, giving voice to countless families facing similar battles while celebrating the extraordinary resilience of her "superhuman" daughters.
