Jesy Nelson has shared an emotional tribute to her twin daughters Ocean Jade and Story Monroe as the girls celebrated their first birthday following their devastating diagnosis with spinal muscular atrophy type 1 (SMA1).
The former Little Mix star, 34, posted a deeply moving montage on Instagram on Friday, giving fans an intimate glimpse into the twins’ difficult first year — from hospital visits at London’s Great Ormond Street Hospital to precious family milestones and their lavish birthday celebration.
Earlier this year, Jesy heartbreakingly revealed that Ocean and Story had been diagnosed with SMA1, a rare genetic condition that causes progressive muscle weakness and wastage. Doctors warned the twins may never walk or regain neck strength.
In the emotional video, Jesy spoke candidly about the reality of raising disabled children, saying: “I’m often asked to describe the experience of what it’s like to raise a child with a disability, to try to help people who have not had that unique experience to understand it, to imagine how it would feel.”
She then read excerpts from the famous poem Welcome To Holland by Emily Perl Kingsley — a touching piece written by a mother raising a child with Down syndrome, often used to describe the emotional journey of parenting children with disabilities.
The montage featured emotional clips of Jesy feeding her daughters, moments from intensive hospital treatments, sweet family memories, and snapshots from her pregnancy. Fans also saw the singer celebrating the girls’ huge milestone with an extravagant first birthday party attended by loved ones, including Jesy’s mother.
Alongside the video, Jesy poured her heart out in a lengthy caption, writing: “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.”
She continued: “Happy Birthday my Ocean and Story you are my whole heart and soul I love you more than you will ever know.”
Since publicly revealing the twins’ diagnosis, Jesy has become a passionate campaigner for newborn SMA screening across England. The singer has worked closely with politicians and health campaigners after discovering the condition too late to receive earlier intervention for her daughters.
Last month, Health Secretary Wes Streeting announced plans for more than 400,000 babies to be screened for SMA from October 2026. However, Jesy recently warned that only certain regions in England will initially offer the testing.
Speaking to fans earlier this month, she admitted the announcement felt “bittersweet,” explaining: “It’s essentially a postcode lottery for your baby which shouldn’t be the case. All babies lives matter.”
Despite the heartbreak, Jesy vowed she would continue fighting until screening becomes available nationwide, telling supporters: “I’m going to keep pushing and trying as much as possible.”
