Jesy Nelson has shared an emotional milestone with her 11-month-old twin daughters, Ocean and Story, as they reached a new achievement in their battle with Spinal Muscular Atrophy (SMA) Type 1. The 34-year-old singer took to Instagram to share a sweet video of the girls trying out their specialized feeding chairs for the first time.
Jesy, who revealed in January that her daughters had been diagnosed with SMA, a rare and severe muscle-wasting condition, captured the precious moment on camera. In the video, Jesy lovingly encourages Ocean, who playfully spits out some fruit purée, saying, “Excuse me, you’re supposed to eat it, not spit it out,” before turning her attention to Story, who seemed to enjoy the treat.
It was a poignant moment for Jesy, who had previously shared that when the feeding chairs arrived in February, she was overwhelmed with emotion. “So the girls need special feeding chairs that came yesterday and I couldn’t help but burst into tears,” she wrote at the time. “It just made me feel so sad as it’s just another reminder of another obstacle we have to tackle.”
Advocating for SMA Screening: Jesy’s Ongoing Fight
Since Ocean and Story’s diagnosis, Jesy has been a vocal advocate for newborn screening for SMA, urging the NHS to implement tests for the condition. The late diagnosis means that Ocean and Story will never be able to walk, a heartbreaking reality for their mother.
The singer has actively campaigned to raise awareness about SMA, and although the UK’s National Screening Committee rejected the call for screening for SMA Type 1 in January, there is a glimmer of hope. In April 2026, Wes Streeting, the Shadow Health Secretary, announced plans for over 400,000 babies to be screened for SMA starting in October 2026.
Jesy has worked closely with Streeting and celebrated this step forward in her advocacy by visiting the Prime Minister’s residence. There, she shared selfies and wrote, “When life throws you lemons…”
However, Jesy also acknowledged the bittersweet nature of the recent developments, explaining to her followers that the screening will only be available in certain areas of England. “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,” she shared, urging continued support for her cause.
The Power of Support
Jesy expressed her gratitude for the outpouring of support she has received, particularly following her petition, which garnered over 100,000 signatures and will now be debated in parliament. “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 wrote, overwhelmed by the impact her campaign has had.
Despite the challenges ahead, Jesy remains hopeful and committed to continuing the fight for universal SMA screening. She vowed to keep pushing for more widespread testing across England, ensuring that every baby has the chance to be diagnosed early.
Understanding SMA: The Impact of the Condition
Spinal Muscular Atrophy (SMA) is a genetic disease that weakens a patient’s muscles by affecting motor neuron cells in the spinal cord. The severity of SMA varies by type, and Type 1 is the most severe. This type is typically apparent at birth and leads to progressive muscle weakness, preventing sufferers from sitting or walking and usually resulting in death by the age of five.
Type 2 SMA is intermediate, with individuals unable to stand. Type 3 is milder, affecting mobility and making it difficult to rise from a sitting position. Type 4 is the least severe, with symptoms typically not appearing until a person is in their 20s or 30s.
As Jesy continues to navigate her daughters’ SMA journey, she remains a powerful voice for change, hoping to make a difference for other families facing the same struggles.
