Jesy Nelson’s world flipped when doctors delivered news no parent wants to hear. Her eight-month-old twin girls, Ocean Jade and Story Monroe, face Spinal Muscular Atrophy Type 1, a rare genetic disorder that hits babies hard and fast. The former Little Mix star opened up in a raw Instagram video, sharing how routine worries turned into a lifelong fight for her daughters’ strength.
Early worries turned real
Life with newborns already brings endless questions, but Jesy sensed something off early. Her twins, born at just 31 weeks after pregnancy complications like twin-to-twin transfusion syndrome, lagged in leg movements compared to other babies. Her mum flagged it first, then feeding issues piled on, yet doctors chalked it up to prematurity and told her not to sweat milestones. Months of hospital runs later, tests at Great Ormond Street confirmed SMA1, the toughest kind where muscles weaken without warning.Think of small bodies designed to wiggle and grab, but instead, the bodies grow tired from breathing or swallowing. SMA1 is caused by an imperfect gene in the SMN1 gene that dramatically decreases the production of the protein necessary for motor neurons to signal muscles to contract. Children display weakness in their muscles to the extent that they may display weakness in their limbs, their cries may be faint, as well as their ability to hold their heads up by the age of six months; breathing problems may soon follow if left untreated. Jesy learned the worst – they may never walk again – but her girls proved her wrong.
What SMA1 means in practice
SMA1 stems from a faulty SMN1 gene, leading to a critical shortage of a protein required for motor neurons to communicate with muscles. The operational impact is stark: weak limbs, faint cries, difficulty holding the head up by six months, and progressive breathing and swallowing challenges if untreated. Prognosis discussions are sobering—many children may never walk. Nelson has been transparent about hearing those realities and choosing to fight forward regardless.
Race against fading milestones
Great Ormond Street acted quickly, initiating gene therapy and support services, which the NHS approves for young patients. Zolgensma is a one-hit wonder and fills cells with ‘working genes’ to give hope for the avoidance of a disaster. “It’s a lifeline for us. The twins breathe better now. They have to struggle with the treatments, but full walks are still a distant dream for them,” Jesy adds. She begs other parents to trust instincts on odd signs like stillness or feeding fights, no matter reassurances. Stories like this ripple out, sparking talks on faster tests and gene fixes that could spare more families the dread. For Jesy, each gained day builds resilience, proving love and science together hold back the fade.
