Jesy Nelson’s fiance says twins are ‘little warriors’ following diagnosis
Nelson has previously revealed that their twins, Ocean Jade and Story Monroe Nelson-Foster, have a rare genetic condition.
Jesy Nelson’s fiance, musician Zion Foster, has described their twin daughters as “two little warriors” in a poem he wrote for them following their diagnosis with a rare genetic condition.
The former Little Mix singer, 34, revealed earlier this month that their twins, Ocean Jade and Story Monroe Nelson-Foster, are unlikely to ever be able to walk after being diagnosed with SMA1 (spinal muscular atrophy), a condition which, according to the NHS, causes muscle weakness, movement problems, problems with breathing and swallowing, muscle tremors, and bone and joint problems.
Foster has since dedicated a poem to their twins in a video he shared on Instagram before going on to describe the lack of SMA1 testing at birth as “indefensible”.
He said: “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?
“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?
“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 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.”
In the video caption, Foster described Nelson as a “superwoman” for addressing the “huge flaw” in the UK healthcare system and campaigning for SMA1 screenings to take place at birth including starting a petition to get the condition added to the newborn blood spot screening test, also known as the heel prick test.
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.
The UK National Screening Committee does not recommend screening but has commissioned work to reassess this due to developments in treatment.
Nelson has said that the twins have now had treatment – a one-off infusion that puts the missing gene back into their body and stops any of the muscles that are still working from dying.
The treatment will not be able to help regain any muscles that have already died.
Following her announcement Health Secretary Wes Streeting told ITV news he backed the singer’s move to challenge the screening process for the rare genetic condition, and said she was “right to challenge and criticise how long it takes to get a diagnosis”.
Scotland has also announced it will start screening babies for SMA from the spring, but the test is not currently available for newborns elsewhere in the UK.
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.
