Jesy Nelson has commemorated her twin daughters' first birthday with an emotional video montage detailing their lives and health struggles. The former Little Mix star's daughters, Ocean Jade and Story Monroe, were diagnosed in January with spinal muscular atrophy type 1 (SMA1), a genetic condition that causes progressive muscle wasting, meaning they are unlikely to walk or regain neck strength.
Birthday Tribute and Personal Reflections
On Friday, Nelson took to Instagram to share a compilation of videos and photographs, offering a glimpse into the twins' lavish first birthday party, visits to Great Ormond Street Hospital, and various milestones throughout their first year. In an audio recording accompanying the montage, she read the well-known 1987 poem "Welcome to Holland" by American writer Emily Perl Kingsley, who is a mother to a child with Down's syndrome. The poem describes the experience of raising a child with a disability.
Nelson captioned the post: "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 milestone to reach."
Campaign for Newborn Screening
Since announcing her daughters' diagnosis, Nelson has tirelessly campaigned for the NHS to expand its newborn screening to include spinal muscular atrophy. Despite the UK's National Screening Committee rejecting calls to introduce checks for another muscular disease in January, Health Secretary Wes Streeting announced last month that more than 400,000 babies will be screened for the condition from October 2026.
Nelson has been liaising with Streeting and recently visited the Prime Minister's residence, sharing selfies and writing: "When life throws you lemons......" While she acknowledged progress, she told fans earlier this month that there is still a long way to go, as only certain areas in England will carry out the tests on newborns.
She explained: "It is a bit bittersweet because basically they are only doing it in certain areas of England, so if you do not live in that certain postcode or part of England then your baby won't be tested for SMA, which is really sad. It's essentially a postcode lottery for your baby which shouldn't be the case. All babies lives matter, so as amazing as it is there is still a long way to go in terms of that. I'm going to keep pushing and trying as much as possible to get this so it is in all areas of England and then also the petition you all kindly signed getting 100,000 signatures is now going to be debated in parliament which is just amazing."
Understanding Spinal Muscular Atrophy
Spinal Muscular Atrophy (SMA) is a disease that weakens a patient's strength by affecting motor neuron cells in the spinal cord, resulting in gradual muscle wasting. The severity varies by type: Type 1 is the most severe, evident at birth, and often leads to death by age five; Type 2 is intermediate, preventing standing; Type 3 is mild, causing difficulty rising from a seated position; and Type 4 presents symptoms in adulthood.
