Jesy Nelson’s devastated fiancé has shared a moving poem addressed to his twin daughters with the Little Mix star following their diagnosis with a severe neuromuscular disorder.
Nelson welcomed daughters Ocean and Story with rapper Zion Foster in May, but the couple were blindsided after doctors diagnosed both children with Type 1 SMA (spinal muscular atrophy).
Considered the most severe form of SMA, Type 1 symptoms – which typically appear in infancy – include extreme muscle weakness, difficulties swallowing and respiratory issues.
Nelson, 34, is now campaigning for SMA1 screening at birth and has started a petition to get the condition added to the newborn blood spot screening test, also known as the heel prick test.
Taking to Instagram on Thursday, her fiancé shared a self-written poem centred on acceptance as he comes to terms with the day-to-day reality of seeing his eight-month old daughters live with the condition.
He read: ‘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 1.
Jesy Nelson’s devastated fiancé has shared a moving poem addressed to his twin daughters with the Little Mixstar following their diagnosis with a severe neuromuscular disorder
Nelson welcomed daughters Ocean and Story with rapper Zion Foster in May, but the couple were blindsided after doctors diagnosed both children with Type 1 SMA
And it became so clear, doctors only go near what they can measure, so what’s certain?
‘I watch your smiles like sunsets, not promised, but real. I listen to you babble the sweetest melodies, in the moment it makes me wonder, if I keep telling you who I want you to be, what I want you to do, what I expect from you, am I loving you, or am I loving my fear?
‘If I take you for how God knitted you, just as you are, nothing removed, am I loving you? Am I accepting you?’
He added: ‘Story, is your heart okay? Ocean, how’s your mind? 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 live 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.’
Captioning the post, Nelson praised his singer fiancée for highlighting England’s lack of birth screening for SMA Type 1.
He wrote: ‘We are all one. Jesy addressing a huge flaw in our healthcare system is the definition of a superwoman.
Taking to Instagram on Thursday, her fiancé shared a self-written poem centred on acceptance as he comes to term with the day-to-day reality of seeing his daughters live with the condition
Captioning the post, Nelson praised his singer fiancée for highlighting England’s lack of birth screening for SMA Type 1
‘Reality is, it’s indefensible and needs to be changed, simple. Test kids at birth for SMA in the UK now that there are revolutionary treatments available.
‘Thank you to the SMA community and wider community of those living with more unique challenges for accepting us, supporting us and fighting with us.’
Addressing the issue during a recent appearance on This Morning, Nelson who has 9.7 million Instagram followers, said: ‘I have this platform, and I almost feel like I’ve got a duty of care to raise awareness about it.
‘A little part of me feels – I don’t know if this is even crazy to say this – it feels selfish to keep this to myself and not potentially save a child’s life.”
According to the NHS website, the test is offered to every baby at five days old, and involves taking a blood sample to find out if it has one of nine rare but serious health conditions.
Considered the most severe form of SMA, Type 1 symptoms include extreme muscle weakness, difficulties swallowing and respiratory issues (pictured, Ocean and Story)
Nelson is now campaigning for SMA1 screening at birth and has started a petition to get the condition added to the newborn blood spot screening test, also known as the heel prick test
Speaking about the response since she revealed the news at the weekend, Nelson said: ‘I’m actually overwhelmed because I wanted it to get as much reach as possible, to raise awareness about it, and just the response I actually can’t believe how amazing the response has been.
‘I could have prevented this from happening if I’d have seen a video and caught it early enough.”
She added: When you know that there is something that can be done about it and it is life-changing to your child, that’s the part that I cannot accept and that is why I’m going to shout to the rooftops about this.’
Since the diagnosis, Nelson said her life has “completely changed”, and that her house looks like a hospital, adding: ‘I just want to be their mum, I don’t want to be a nurse.
‘They’ve had treatment now, thank God, that is a one-off infusion.
The former Little Mix star addressed the issue during a recent appearance on This Morning
Newborn screening for SMA is currently not available in the UK, but Scotland has announced it will screen babies from the spring
‘It essentially puts the gene back in their body that they don’t have and it stops any of the muscles that are still working from dying. But any that have gone, you can’t regain them back.
‘I just want to reiterate that if this is caught from birth, it’s just life-changing.’
Newborn screening for SMA is currently not available in the UK, but Scotland has announced it will screen babies from the spring.
The UK National Screening Committee does not recommend screening but has commissioned work to reassess this due to developments in treatment.
Nelson 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.
