Former Little Mix star Jesy Nelson recently shared a heartwarming video of her daughter Story saying “Muma” for the first time. The clip, posted on Instagram, was accompanied by a caption that read: “Story said Muma for the very first time, my life is complete.”
For many parents, a child’s first word is a milestone filled with joy and excitement. But for Jesy, this moment carries an even deeper emotional significance. Her twin daughters, Story Monroe and Ocean Jade, were diagnosed earlier this year with spinal muscular atrophy (SMA), a rare genetic condition that causes progressive muscle weakness and can severely impact movement, breathing, and swallowing.
At just 11 months old, the twins face a difficult journey ahead. Jesy has been open about the reality of their diagnosis, sharing that their prognosis suggests they may not reach their third birthday. Despite this, Story’s first word became a rare moment of happiness in what Jesy has described as an often painful experience.
The singer recently opened up about the emotional toll of watching her daughters undergo treatments and adjustments, including being fitted with leg splints to support their joints. In an Instagram story, she shared the heartbreaking experience of picking up the splints for her daughters.
“Today I had to go and pick up the girls’ splints because their feet are pointing this way and they need to be flattened out, and it made me really sad,” Jesy said. Holding up both of her daughters’ splints, she added, “But have you ever seen anything cuter in your life? Look at them. This one is Story’s, she has hearts and Ocean has butterflies. It made me sad though, it’s just another reminder.”
Jesy has also used her platform to advocate for change, campaigning for routine newborn screening for SMA across England. While Scotland has now introduced testing for all newborns within days of birth, Jesy has expressed mixed feelings about the development. She believes that earlier detection could have changed the course of her own children’s lives.
In a recent Instagram Story, the singer shared her emotional response to the news. “Today my heart feels super heavy. It’s a very bittersweet moment knowing that Scotland has become the first UK nation to screen babies for SMA. We’re so close yet so far. I will never be able to understand why we still do not test for it here in England.”
Her campaign has gained significant traction, with a petition calling for SMA to be added to the standard heel-prick test given to babies shortly after birth. The effort has already surpassed 100,000 signatures, making it eligible for parliamentary debate.
Jesy has since become a patron of Spinal Muscular Atrophy UK, continuing to raise awareness and push for earlier intervention for families facing similar diagnoses.
Despite the challenges, moments like Story saying “Mama” bring a sense of hope and light into Jesy’s life.
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