‘I hear strength in your lungs every time you cry’: Jesy Nelson’s fiancé writes a heartbreaking poem to their twin daughters Story and Ocean after devastating SMA Type 1 diagnosis

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Jesy Nelson’s fiancé has publicly shared a heartfelt poem written for his twin daughters after they received a diagnosis of a serious muscle-affecting condition.

In May, Nelson and rapper Zion Foster were thrilled to welcome their twin daughters, Ocean and Story. However, they were shocked and heartbroken to learn that both girls had been diagnosed with Type 1 spinal muscular atrophy (SMA).

Type 1 Spinal Muscular Atrophy (SMA) is the most serious form of the condition. Symptoms usually start in babies and include severe muscle weakness, trouble swallowing, and breathing problems.

Nelson, age 34, is now working to make screening for Spinal Muscular Atrophy type 1 (SMA1) part of routine newborn testing. He’s started a petition to include the condition in the heel prick test, which is a standard blood test given to newborns.

On Thursday, her fiancé shared a poem he wrote on Instagram about learning to accept the daily challenges of raising their eight-month-old daughters, who have a medical condition.

I remember the doctor telling us it wasn’t likely I’d ever walk or even talk. They said I probably wouldn’t even be able to lift my head. That’s what I heard, and Jesy heard it too – it was Spinal Muscular Atrophy Type 1.

And it became so clear, doctors only go near what they can measure, so what’s certain?

I cherish your smiles, fleeting and genuine, like beautiful sunsets. Your little talks are like the sweetest songs. It makes me think: when I constantly try to shape you into who I want you to be, am I truly loving you, or am I just trying to soothe my own anxieties?

If I love and accept you completely, exactly as you are, without wanting you to change anything about yourself, am I truly showing you love and acceptance?

He asked Story if she was doing okay, and Ocean how she was feeling. He said he could hear their resilience even when they were upset, calling them two little fighters who already knew how to be strong.

I’m not really concerned with hitting certain life goals or rushing things. My real worry is much more personal – it’s about truly accepting and loving you exactly as you are, without any expectations or conditions.

‘No matter what tomorrow brings, and no matter what yesterday was.’ 

Nelson commended his fiancée, a singer, for bringing attention to the fact that England doesn’t routinely screen newborns for Spinal Muscular Atrophy Type 1.

He shared a message praising Jesy for speaking out about a major problem with healthcare, calling her a ‘superwoman’ for doing so and emphasizing that we’re all connected.

The current situation is unacceptable and must be improved. With groundbreaking treatments now available, the UK should begin newborn screening for Spinal Muscular Atrophy (SMA).

We’re so grateful to the SMA community and everyone facing difficult challenges for welcoming, helping, and standing with us.

Speaking on the show This Morning, influencer Nelson, who has 9.7 million Instagram followers, explained that he feels responsible for using his platform to highlight this important issue.

A part of me wonders if it’s selfish to not share this information, especially if it could potentially save a child’s life.

The NHS offers a blood test to all newborns around five days old. This test checks for nine uncommon but potentially severe health problems.

Since sharing the news over the weekend, Nelson said she’s been incredibly overwhelmed by the amazing response. She hoped to reach as many people as possible to raise awareness, and the support she’s received has far exceeded her expectations.

‘I could have prevented this from happening if I’d have seen a video and caught it early enough.”

She explained that knowing there’s a solution that could dramatically improve her child’s life makes it impossible for her to stay silent, and that’s why she feels compelled to raise awareness about this issue.

Nelson explained that her life has been drastically different since receiving her diagnosis, and her home now feels more like a hospital than a family home. She expressed a simple desire: to be a mother to her children, not a nurse.

‘They’ve had treatment now, thank God, that is a one-off infusion.

Okay, so basically, this treatment? It’s incredible. They actually replace the missing gene – the one that’s causing all the muscle weakness. And it doesn’t just halt the problem, it stops any muscles that are still functioning from deteriorating further. It’s not a cure-all, though. If a muscle is already gone… well, that’s it. You can’t bring those back, and honestly, knowing that breaks my heart, but it’s still amazing what it can do!

‘I just want to reiterate that if this is caught from birth, it’s just life-changing.’

Currently, the UK doesn’t routinely screen newborns for Spinal Muscular Atrophy (SMA), but Scotland plans to begin screening babies this spring.

Currently, the UK National Screening Committee doesn’t advise screening for this condition. However, they’re reviewing this decision because of recent improvements in treatment options.

Nelson became well-known after winning the TV show The X Factor in 2011 as a member of the group Little Mix, alongside Leigh-Anne Pinnock, Perrie Edwards, and Jade Thirlwall.

After almost ten years with the band, she departed in December 2020 and has since launched a solo career. She released her first single, “Boyz,” featuring Nicki Minaj, in 2021, followed by “Bad Thing” in 2023.

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2026-01-15 13:04