Former Little Mix star Jesy Nelson posted a video of her daughter Story saying ‘Muma’ for the very first time.
Captioning the clip on Instagram, Jesy wrote: ‘Story said Muma for the first time my life is complete.’
While a first word is a milestone for every baby, for Jesy, it carries an even heavier emotional weight.
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.
The 34-year-old has been open about the reality of the diagnosis, and previously said their prognosis means they are unlikely to make it to their third birthday.
Story’s first word is a rare moment of joy in what Jesy has described as an often painful journey, given the seriousness of the girl’s condition.
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It comes just weeks after she admitted feeling ‘heartbroken’ watching her daughters undergo new treatments and adjustments, including being fitted with leg splints to support their joints.
‘So, 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 in her Instagram stories.
Holding up both of her daughters’ splints, the singer 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.’
The singer has also been using her platform to push 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 said the development feels ‘bittersweet’, knowing earlier detection could have changed the trajectory for her own children.
In a post on her Instagram Story last month, the Boyz hitmaker said: ‘Today my heart feels super heavy. It’s a very bittersweet moment knowing that Scotland had 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 — a campaign that 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 advocate for earlier intervention for families facing the same diagnosis.
Despite the heartbreak, moments like Story saying ‘Mama’ offer a glimpse of light for Jesy.
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