Jesy Nelson’s world fractured when her twin daughters, Ocean Jade and Story Monroe, received a devastating diagnosis at just eight months old: Spinal Muscular Atrophy, a muscular disease that threatens to steal their ability to walk.
The former Little Mix star, still reeling from a turbulent pregnancy that kept her hospitalized for months, now faces a future filled with uncertainty and a profound sense of helplessness. She openly admits to a grief so deep she fears she’ll “never be able to get over it or accept it.”
Driven by a desperate hope to spare other families the same anguish, Jesy bravely shared her story on television, explaining her decision to go public wasn’t about seeking sympathy, but about potentially saving lives. She believes that early detection is crucial, and a simple change could make all the difference.
Doctors delivered the heartbreaking news that her daughters would “probably never walk” or regain essential muscle strength, confining them to wheelchairs. The realization dawned not from medical professionals, but from her own mother, who noticed her babies’ legs weren’t moving as they should.
“When you know that there is something that could be done about it and it’s life changing, that’s something I cannot accept,” Jesy confessed, tears streaming down her face. The weight of becoming a caregiver, rather than simply a mother, felt unbearable. “I just want to be their mum, I don’t want to be a nurse.”
Amidst the pain, a glimmer of hope shines through the unbreakable bond between her daughters. “They have each other,” Jesy shared, her voice thick with emotion. “They’re twins and going through this together and I think that’s beautiful.”
Jesy is now passionately campaigning for SMA screening to be included in routine newborn tests, a simple heel prick that could detect the condition in those critical first days of life. Currently, the test isn’t mandatory, checking for only nine rare conditions.
Her daughters have type one SMA, the most common and severe form, impacting breathing, swallowing, and overall muscle function. Early treatment is vital; without it, life expectancy is tragically short. Jesy emphasizes that the treatment they are receiving is already saving their lives.
Overwhelmed by the outpouring of support, Jesy expressed her sincere gratitude to fans who have listened, learned, and offered messages of hope. She’s determined to fight for change, promising to keep everyone updated on her progress and appearing on television to raise awareness.
“I just need you to know that I am so determined to make this happen,” she declared. “I am going to fight as much as I can to make this part of the newborn screening.” Her journey is a testament to a mother’s unwavering love and a fierce determination to protect her children, and countless others, from a heartbreaking fate.
