Jesy Nelson has shared a touching new glimpse into life with her nine-month-old twin daughters, Ocean and Story, after the girls were recently fitted with leg splints during their ongoing treatment at Great Ormond Street Hospital.
The former Little Mix star, 34, posted sweet new photos on Instagram showing the twins bundled up for a walk outdoors, wrapped warmly in their double pram and wearing matching fluffy pink hats. In the pictures, the babies could also be seen with feeding tubes in their noses, while another tender snap showed them snuggled up together in bed, still wearing their splints.
Jesy first revealed in January that Ocean and Story had been diagnosed with Spinal Muscular Atrophy, a rare genetic neuromuscular condition that weakens muscles by affecting the motor nerve cells in the spinal cord. The most severe form, Type 1, can be life-limiting without treatment.
Her latest post came just days after she shared emotional images from Great Ormond Street, where the twins were being cared for by medics. Although Jesy did not go into detail about the exact treatment they were receiving, the update offered another honest look into the reality of their daily
It also followed an emotional visit to Scotland, where Jesy travelled to the newborn blood spot screening laboratory that has become the first in the UK to test babies for SMA at birth. Sharing a photo from the visit with medical staff, she wrote: “Emotional day in Scotland visiting the newborn blood spot screening laboratory for SMA.”
Under a new two-year pilot scheme, every baby born in Scotland will now be screened for the condition. Jesy later described the news as “bittersweet”, admitting that earlier testing could have made her daughters’ lives “look so different”.
SMA UK chief executive Giles Lomax said the move in Scotland should push the rest of the UK to act faster, explaining that “every month another four babies are diagnosed with SMA and the clock is always ticking.” He added that with all three treatments now routinely available through NHS Scotland alongside newborn screening, “the future for anyone diagnosed with SMA is very different” and that early testing “basically gives children the life they deserve.”
Despite the heartbreaking diagnosis, Jesy has chosen to continue filming her Prime Video series, saying she hopes the family’s story can help drive real change. During a Q&A, she explained: “I just hope people continue to watch the next part of the journey. When the girls got their diagnosis, we decided that we wanted to continue filming.”
She added: “As hard as it was, we were like, ‘You know what? There’s a reason you guys are here, and we’ve got to make the best out of this situation.’”
Since going public with the twins’ condition, Jesy has become one of the most visible campaigners calling for the NHS to introduce routine newborn screening for SMA. Last month, she broke down in tears after her petition passed 100,000 signatures, meaning it must now be considered for debate in the House of Commons.
Reacting to that milestone, Jesy said: “I cannot actually put into words how grateful I am that this moment has just happened right here. And it is all thanks to you guys. Thank you to every single person that took time out of their day to sign this petition. You have no idea how much this means to me and the SMA community.”
She continued: “This is the first hurdle but we bloody did it and I truly believe that together we are going to make change!”
Jesy has also now officially become a patron of SMA UK, saying she was “deeply touched” to take on the role and vowing to keep using her platform to support other families facing the same diagnosis.
In a message shared alongside her certificate of patronage, she wrote: “Today I’m incredibly proud to share that I’ve officially become a patron of SMA UK. This truly means so much to me. I’ve been deeply touched by the SMA community, from the strength of the children, the resilience of the families, and the love that surrounds them every single day.”
She added: “I’ll be using my voice to keep raising awareness not only for my girls, but to support families going through the same experiences, and campaigning for the SMA test to be added to the newborn screening heel-prick test so more babies can get the help they need as early as possible.”
Jesy has previously spoken candidly about the emotional toll of caring for Ocean and Story, admitting that the medical procedures they must go through each day can leave her feeling as though she is hurting them as they cry and scream. She described the experience as an emotional rollercoaster, saying some days are “really fing s” while others feel a little lighter.
She also told Jamie Laing on his Great Company podcast that she remains determined to believe her daughters can beat the odds. “It’s not okay, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation,” she said. “And my girls are the strongest, most resilient babies and I really believe that they are going to defy all the odds.”
For now, Jesy says everything else has taken a back seat, including music. Speaking on Heart FM’s Breakfast show, she made it clear where her priorities now lie.
“Look listen I’d never say never say never to music,” she said, “but for me, my girls are my main focus. I’ll be honest with you, I’ve not got time, I really don’t.”
“They are my whole heart and soul and my main focus, and I want to continue advocating for them and getting this heel prick test changed and getting them strong, that’s my main focus. Because that’s going to determine their future.”
