Jesy Nelson shares emotional update as daughter defies the odds after devastating SMA diagnosis

Lydia Davies
Wed, 29 Apr 2026 12:53:44 +0000

Jesy Nelson has shared her delight after her daughter said “Mama” for the first time, a moment made even more emotional by her twins’ rare genetic condition.

The singer took to Instagram to post a video showing Story lying down with her feeding tube in place, repeating the word “Mama”.

“Story said Mama for the first time, my life is complete,” Ms Nelson wrote alongside the clip.

The former Little Mix star could be heard screaming with joy behind the camera.

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Fans quickly flooded the comments with messages of support.

“Look at her smiling like yes mama I just called your name,” one wrote, while another said: “This is unreal!!! Clever girl.”

A third added: “This may be the cutest thing ever."

Another commented: “Beautiful!! Such a special moment!!!”

Celebrities also shared their reactions, with Dani Dyer writing: “This is so special.”

Denise Welch added: “Oh Jesy!”

Sarah Louise Merrygold commented: “Oh, this is so precious.”

Imogen Horton simply wrote: “Omg!”

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A post shared by @jesynelson

The milestone carries particular significance for Ms Nelson, whose twin daughters Story Monroe and Ocean Jade were diagnosed earlier this year with spinal muscular atrophy Type 1.

The rare genetic condition causes progressive muscle weakness and can severely affect a child’s ability to move, breathe and swallow.

Ms Nelson has previously revealed that doctors warned her daughters may not survive beyond early childhood.

She first shared the diagnosis in January, explaining the condition could prevent the twins from ever being able to walk.

The update comes weeks after the singer spoke of her heartbreak at watching her daughters undergo treatment, including being fitted with leg splints.

“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,” she said on Instagram.

Showing the splints, she added: “But have you ever seen anything cuter in your life? Look at them.”

“But it made me sad though, it’s just another reminder.”

Ms Nelson has since campaigned for routine newborn screening for SMA to be introduced across England.

Scotland recently became the first UK nation to test all babies for the condition shortly after birth, a move Ms Nelson described as “bittersweet”.

“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 said.

Her petition to add SMA to the standard heel-prick test has gathered more than 100,000 signatures, qualifying it for parliamentary debate.

Ms Nelson is also a patron of Spinal Muscular Atrophy UK.

Zion Foster, a British singer and rapper from South London, is the father of the twins.

The pair began dating in 2022, got engaged in 2025, and appeared to split in January 2026 while continuing to co-parent.

Story's heartwarming milestone comes just weeks after Ms Nelson issued an urgent appeal after her car was stolen from outside her home in Brentwood, Essex.

The vehicle contained vital medical equipment for her daughters, with a £10,000 reward offered for its return.