Jesy Nelson has shared a moving tribute to mark the first birthday of her twin daughters as she continues to campaign for SMA 1 (spinal muscular atrophy) screening following their diagnoses.
The former Little Mix star, 34, shared in January that her baby daughters, Ocean Jade and Story Monroe Nelson, had been diagnosed with SMA1, a genetic condition that causes progressive muscle wastage.
Ms Nelson has thrown herself into campaigning since then, launching a petition that’s now gathered more than 100,000 signatures calling on the Government to include SMA in the newborn blood spot screening test.
Early detection is crucial because treatments can be highly effective when given soon after birth, which is why the singer has been pushing so hard for change.
Along with a sweet video featuring footage of her daughters, Ms Nelson wrote on Instagram: “I cannot believe it has been a whole year since having my beautiful baby girls.
“They have been through so much. There will never be enough words to describe just how incredible they actually are.
“My tiny little super humans. The strongest, most resilient little fighters I’ve ever known.
“You inspire me and every single person that ever meets you both.
“One whole year old today what a mile stone to reach. I read this poem a little while ago by Emily Perl Kingsley ‘welcome to Holland’ and I think this sums up their journey so beautifully.
“Happy Birthday my Ocean and Story you are my whole heart and soul I love you more than you will ever know.” (sic)
The poem, which Ms Nelson placed over the video, is by Emily Perl Kingsley and describes what it feels like to raise a child with a disability.
According to the NHS, SMA causes muscle weakness, movement problems, issues with breathing and swallowing, muscle tremors, and bone and joint problems.
In January, Ms Nelson revealed that her daughters’ diagnosis meant they are unlikely to be able to walk or regain their neck strength.
She has since been campaigning for the condition to be added to the newborn blood spot screening test, as early treatment can help avoid some of its most devastating effects.
Ms Nelson met with the former Health Secretary Wes Streeting in the same month to speak about the life-changing impact early detection of the condition could have had on her twins, and in April visited 10 Downing Street.
She also became a patron of the charity SMA UK in February.
Ms Nelson rose to fame after winning The X Factor in 2011 alongside Leigh-Anne Pinnock, Jade Thirlwall and Perrie Edwards.
She left the group in 2020 after the group scored five number one songs, including Wings, Shout Out To My Ex, and Sweet Melody, as well as one number one album in the UK charts.
Working alongside the Daily Mirror and SMA UK, Ms Nelson launched a campaign calling for all newborns to receive a £5 test that could identify the condition early enough for life-changing treatment.
Mr Streeting responded by agreeing to bring forward a planned screening trial from January 2027 to October this year, with around 404,000 babies set to be tested in a phased rollout across England.
However, Ms Nelson criticised the decision to exclude 163,000 babies as a control group, calling it “literally a postcode lottery.”