Jesy Nelson "fighting" to get SMA Type 1 tested at birth after her twins' diagnosis

7 January 2026, 12:13

Jesy Nelson shared an update from hospital and revealed she’s petitioning for SMA Type 1 to be tested from birth.

Former Little Mix star Jesy Nelson has taken to social media to reveal that she’s "fighting" to get SMA Type 1 tested at birth, after her twin daughters' diagnosis.

After battling through a high-risk pregnancy, Jesy welcomed her twin babies, Ocean Jade Nelson-Foster and Story Monroe Nelson-Foster, with fiancé Zion Foster in May 2025. Although the twins were premature, they were said to have arrived "healthy and fighting strong".

However, after months of investigation and hospital appointments, Jesy revealed that the twins have been diagnosed with the rare and incurable muscle disease, SMA Type 1. Sharing that she's been told her twins will likely never walk, she explained that a heel-prick test at birth could have led to an earlier diagnosis and treatment.

Following an outpour of love and support from celebrities, including the likes of ex-boyfriend Chris Hughes, Jesy has decided to campaign for SMA Type 1 testing at birth to be made mandatory on the NHS.

• Read more: Jesy Nelson's ex Chris Hughes shows support after emotional twin health update

In an Instagram story from hospital, she said: “Hey guys, I just wanted to come on here to do another video to just basically say thank you, genuinely so so much from the bottom of my heart for just the outpour of support and beautiful messages for me and so many other families that are dealing with this horrible diagnosis.

“I’m genuinely actually really overwhelmed by the amount of support. I just want to say thank you to everyone that shared it, to everyone that wants to learn about it, that’s taking the time to watch it and sending me their beautiful messages.

“Thank you from me and the SMA community just appreciate it so much.”

According to the NHS, Spinal muscular atrophy (SMA) is a rare genetic condition that can cause muscle weakness, which worsens over time. While there are medicines and other treatments to help manage the symptoms, routine heel-pricking shortly after birth is yet to be introduced to the UK.

Jesy explained that she was starting a petition to get SMA Type 1 included in newborn screening. She said: “I am starting a petition to try and get the SMA on the newborn screening heel prick testing from birth, and I just need you to know that I am so determined to make this happen.

“So I am going to fight as much as I can to make this part of the newborn screening. It’s currently under review, so I will keep you updated with that one guys."

Jesy Nelson thanks fans for support as she announces SMA petition

When Jesy first opened up about the diagnosis, she highlighted the importance of a heel prick test, saying: "The main thing I want to get across here is that, the majority of this can be prevented if it's detected from birth and all it takes is a heel prick.

"It's not in this country, [but] there are many countries where it is tested at birth with just a simple heel prick. And I don't think anyone understands like how much this can change your child's life."

Jesy explained that children who have detected SMA early have gone on to living healthy lives, while her twins are going to be disabled.

Read more celebrity news here:

• Jesy Nelson reveals her twins may never walk after heartbreaking incurable muscle disease diagnosis
• Molly-Mae praised for dedicating NTA to Rob Burrows amid backlash
• Perrie's fiancé Alex speaks about heartbreaking miscarriage for the first time
• Why Jesy Nelson's twin baby names aren't a tribute to Little Mix's Jade Thirlwall
• 'Madeline' from Lily Allen's album responds to hate over David Harbour relationship

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