Former member of Little Mix, Jesy Nelson, shared a heartwarming video of her daughter Story saying “Muma” for the first time. Posting the clip on Instagram, Jesy captioned it with: “Story said Muma for the very first time, my life is complete.”
For many parents, a baby’s first word is a milestone filled with joy. For Jesy, this moment carries an even deeper emotional significance. Her twin 11-month-old 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 affect movement, breathing, and swallowing.
At 34 years old, Jesy has been open about the challenges of raising two children with SMA. She has previously shared that their prognosis is grim, with the possibility that they may not reach their third birthday. Story’s first word, therefore, is a rare and precious moment of hope in what Jesy describes as a difficult journey.
The milestone comes just weeks after Jesy expressed feelings of heartbreak while watching her daughters undergo new treatments, including being fitted with leg splints to support their joints. In one of her Instagram stories, she described the experience:
“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,” she 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 called the development “bittersweet.” She believes that earlier detection could have changed the course of her own children’s lives.
In a recent post on her Instagram Story, she shared: “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.”
She has launched a petition calling for SMA to be added to the standard heel-prick test given to babies shortly after birth. The campaign has already gathered over 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 heartbreak, moments like Story saying “Mama” offer a glimpse of light for Jesy. These small victories remind her of the strength and love that continue to drive her forward.
Got a story?
If you’ve got a celebrity story, video, or pictures, get in touch with the .co.uk entertainment team by emailing us [email protected], calling 020 3615 2145, or by visiting our Submit Stuff page – we’d love to hear from you.
Comment now
Comments
Add as a Preferred Source on Google
Add as preferred source
