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Jesy Nelson's fiance has described their twin daughters as "two little warriors" in their battle with a muscle wasting disease.

Musician Zion Foster also described the lack of testing at birth for spinal muscular atrophy (SMA) as "indefensible" in a post on Instagram. Former Little Mix singer Jesy revealed this month that their twins, Ocean Jade and Story Monroe Nelson-Foster, have SMA and are unlikely to ever walk after being diagnosed and treated too late.

The Mirror is campaigning for SMA to be added to the NHS newborn heel prick test so that babies with the disease can be immediately treated to halt the death of neurons which enable muscles to work.

• Dad says Government is ‘playing God’ by refusing test for muscle wasting disease

• NHS newborn test to stop kids being left disabled is ‘no brainer’, expert proves

In a poem posted to the social media site, Zion, 27, posted: "They said it's unlikely you'll walk, you may not be able to talk, probably won't be able to hold your head up.

"That's what me and Jesy heard. SMA type one and it became so clear, doctors only go near what they can measure. So what's certain?”

It continued: "I hear strength in your lungs every time you cry, two little warrior girls who already know how to fight. Honestly, my worry isn't the milestones. Isn't forcing life to look a different way. My worry is quieter than that, deeper.

"It's about accepting you, loving you for who you are right now, without conditions, no matter what tomorrow brings, and no matter what yesterday was."

Since 2019 three curative treatments have been made available on the NHS which halt the death of neurons and stop the disease in its tracks - but they cannot reverse disability once nerve damage has been done. Most other developed nations screen for SMA at birth.

In the video caption, Zion described Jesy, 34, as a "superwoman" for addressing the "huge flaw" in the UK healthcare system.

Their twins have the more severe Type 1 form of SMA which can leave some children requiring being fed via a tube direct into their stomach, a machine to help them breath and a nurse at their bedside every night to ensure they don’t stop breathing.

The Mirror this week reported on a Lancet study showing that adding a £5 blood test for SMA to the NHS newborn heel prick blood test would save lives and taxpayers’ money.

But despite overwhelming evidence from here and abroad, the Government is refusing to rollout a newborn SMA test

Instead ministers are following a recommendation from the UK National Screening Committee to plan an NHS pilot first. This is unlikely to start until 2027 at the earliest and means babies in parts of England and Wales will not be checked while outcomes are monitored.

It suggests full UK rollout of a newborn SMA blood test is unlikely before 2031. In contrast, NHS Scotland is not waiting and is rolling out an SMA test for all newborns from the spring.

Jesy rose to fame after winning The X Factor in 2011 with Little Mix alongside Leigh-Anne Pinnock, Perrie Edwards and Jade Thirlwall. She left the band in December 2020 after nearly a decade together, and has since released two songs as a solo artist: Boyz, which featured US rapper Nicki Minaj, in 2021, and Bad Thing in 2023.