Jesy Nelson Shares Adorable Family Moment While Championing SMA Awareness
Former Little Mix singer Jesy Nelson has captured the hearts of her followers by posting a deeply touching video on her Instagram stories. The clip features one of her twin daughters giggling joyfully while being cuddled and showered with kisses by her grandmother. In the background, the 34-year-old artist can be heard laughing affectionately, adding to the warmth of the moment.
A Glimpse into Motherhood Amid Health Challenges
In a second video shared by Nelson, she humorously showcased her daughter's growing hair, joking about the baby's "little mullet" and describing her as resembling "a little cabbage patch doll" with curly tufts. These lighthearted snippets come as Nelson continues to navigate the serious health struggles of her twins, Ocean Jade and Story Monroe, who were born prematurely in May 2025 following complications with twin-to-twin transfusion syndrome (TTTS).
Both infants were subsequently diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic condition that affects approximately one in 10,000 newborns. The disorder impacts muscle strength and movement, potentially leading to severe muscle weakness that can hinder a child's ability to sit, crawl, or walk, and may cause breathing and swallowing difficulties.
Advocacy for Early Detection and Screening
Jesy Nelson has become a vocal advocate for SMA awareness since her daughters' diagnosis, which was initially suspected by her mother who noticed unusual movements in the babies. She recently appeared on Heart Breakfast to discuss her petition, which has garnered over 100,000 signatures, calling for SMA screening to be included in the standard newborn blood test in the United Kingdom.
"It's completely curable if it's caught early," Nelson explained to hosts Amanda Holden and Jamie Theakston. "But for some reason, it's not part of the heel-prick test that every newborn gets. It comes down to money—and that's heartbreaking, because early diagnosis can change a child's entire life."
Celebrating Small Victories and Maintaining Hope
Despite the challenges of the past year, filled with hospital visits and concerns, Nelson focuses on celebrating every small achievement in her children's progress. "It's still 50/50—you never know how they'll progress," she shared. "But when I see them holding their heads up for five seconds, that's my new milestone. That's my win."
Her openness about the family's journey has resonated deeply with fans, who have praised her honesty and strength, describing her as "an inspiration" for discussing such personal challenges publicly. Through her social media, Nelson continues to share moments of light and laughter from her motherhood experience, balancing advocacy with personal joy.
