Jesy Nelson took to her Instagram Stories on Saturday, sharing a sweet snapshot of her beloved twin daughters undergoing physiotherapy as they continue their health battle. The 34-year-old singer, who revealed in January that her now one-year-old twins Ocean and Story had been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare muscle-wasting condition, made the most of the UK heatwave by taking the tots to the park.
Physio in the Park
Laying the little ones on their backs, Jesy and a friend helped her daughters with exercises to build muscle strength in their legs. She captioned the snap: 'Physio in the park'. The late diagnosis means her daughters are likely never to be able to walk and require specialist equipment to help them breathe at night, as well as feeding tubes.
Campaigning for NHS Screening
Last week, Jesy celebrated a major milestone as she announced that SMA will now be debated in Parliament. The singer has campaigned tirelessly for the NHS to expand its screening to check for SMA following her own experience. Jesy shared the news that the UK Government has confirmed the petition to add SMA to newborn screening in England will be debated in Parliament on 22 June.
In March, the NHS announced they would roll out 'heel prick' testing on newborns for SMA, despite the UK's National Screening Committee rejecting calls to introduce checks for another muscular disease in January. Health Secretary Wes Streeting confirmed plans for more than 400,000 babies to be screened for the condition from October 2026. Celebrating the news, Jesy wrote on Instagram: 'A big step forward for SMA, ISE have announced to start screening for SMA in England will now begin in October 2026. I am so proud as this is a major milestone for the SMA community.'
Daily Struggles and Hope
Despite her daughters' devastating prognosis that they may not live beyond the age of two, Jesy has decided to keep filming her Prime Video series as she fights to 'make a change'. In a Q&A, she said: '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. 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".'
Jesy previously told the Daily Mail that the medical procedures her babies must endure each day leave her feeling like she's hurting them as they cry and scream. She described caring for the twins as an emotional rollercoaster, with some days being 'really f***ing s***' and others slightly lighter. Speaking to Jamie Laing on his Great Company podcast, Jesy said she is hopeful that her babies will defy the odds now that they are receiving treatment and go on to have a longer life expectancy.
What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy (SMA) is a disease that weakens a patient's strength by affecting the motor neuron cells in the spinal cord. It results in gradual muscle wasting, and the severity of symptoms varies by type. Type 1 SMA is the most severe and is evident at birth. The weakening of muscles means sufferers cannot sit and usually leads to death by the age of five. Type 2 is intermediate with the sufferer being unable to stand. Type 3 is mild and makes it difficult to get up from a sitting position. Type 4 sufferers don't have symptoms until they are in their 20s or 30s.
