Jesy Nelson has marked her twin daughters’ first birthday with an emotional video about their lives and health battles.
In January, the star’s daughters Ocean Jade and Story Monroe were diagnosed with SMA1 (spinal muscular atrophy), a genetic condition causing progressive muscle wastage, which means they are unlikely to walk or regain neck strength.
On Friday, she took to Instagram to share a montage of videos and pictures of her daughters, including a sweet insight into their lavish first birthday party, trips to Great Ormond Street Hospital and various milestones in their lives.
In an audio recording over the montage, Jesy said: ‘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 the well-known 1987 poem Welcome To Holland by American writer Emily Perl Kingsley, who is mother to a child with Down syndrome, which describes the feeling of living with a child with a disability.
Jesy Nelson has marked her twin daughters’ first birthday with an emotional video about their lives and health battles
In January, the star’s daughters Ocean Jade and Story Monroe were diagnosed with SMA1 (spinal muscular atrophy), a genetic condition causing progressive muscle wastage, which means they are unlikely to walk or regain neck strength
She shared snaps from her pregnancy
Jesy’s video featured a series of moments throughout the twins’ first year, including their various health battles, milestones and treatments. She shared her daughters with ex-boyfriend Zion Foster.
She added a caption reading: ‘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 . 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’.
Since announcing her daughters’ diagnosis, Jesy has campaigned tirelessly for the NHS to expand its screening at birth to check for spinal muscular atrophy following her own experience with her daughters.
Jesy was joined by her mother at the birthday bash
She shared a touching caption alongside the video
In an audio recording over the montage, Jesy said: ‘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’.
Despite the UK’s National Screening Committee rejecting calls to introduce checks for another muscular disease in January, last month Wes Streeting announced plans for more than 400,000 babies to be screened for the condition from October 2026.
Jesy has been liaising with the politician and marked another chapter in her fight for the cause with her visit to the Prime Minister’s residence, where she snapped selfies and wrote the poignant caption: ‘When life throws you lemons……
While she has proudly professed that her fight has come on leaps and bounds, earlier this month Jesy told fans there is a long way to go as only certain areas in England will be carrying out the tests on newborns.
Jesy showcased her vast spread for her daughters’ big day
She shared pictures from some of their trips to London’s Great Ormond Street Hospital
‘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’, she explained.
‘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.
‘That is all down to you guys so thank you so so much, you’re incredible and I am so appreciative of all the support and love, thank you so much.’
She share a video showing her feeding her daughter
