Jesy Nelson has opened up about her heartbreaking journey as a mother to twins Ocean and Story, both diagnosed with Spinal Muscular Atrophy (SMA), a rare genetic neuromuscular disease. In a candid post shared on Instagram, Jesy reflected on the bittersweet news of Scotland becoming the first part of the UK to introduce SMA newborn screening, a change she fought for after her daughters’ diagnosis.
A Fight for Change
The 34-year-old former Little Mix star revealed that she has been tirelessly campaigning for SMA to be included in routine newborn checks, after her daughters were diagnosed with SMA Type 1 (SMA1) in January 2026. “It’s a very bittersweet moment knowing that Scotland had become the first UK nation to screen babies for SMA,” Jesy shared. “We’re so close yet so far. I will never be able to understand why we still don’t test for it here in England.”
Jesy’s heartache was compounded by the realization that, had the screening been available in England, her daughters’ lives could have looked very different. Despite this, Jesy vowed to continue her fight for change, saying: “I will keep fighting and pushing for change because nobody should ever have to go through this heartache.”
Managing SMA1 and the Reality of Parenthood
SMA1 is the most severe and rarest form of the condition, with a life expectancy of less than two years without medical intervention. Since her daughters’ diagnosis, Jesy has been openly documenting their health struggles on social media, including her sadness over their need for leg splints to help with their pointed feet. In a touching Instagram video, Jesy showed her followers the tiny splints that Ocean and Story will wear, while expressing the emotional difficulty of seeing her babies face these challenges.
“I just hope people continue to watch the next part of the journey,” Jesy said. “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.'”
A Family’s Strength and Dedication
Jesy and her ex-fiancé, Zion Foster, welcomed their daughters in May 2025. Since their diagnosis, Jesy has committed herself to raising awareness about SMA and using her platform to push for better screening in the UK. In her Instagram post, she added, “I just miss them being babies. But I’m just so happy that we’ve been able to document everything, because I really believe that we’re going to make a change.”
Despite the challenging prognosis, Jesy remains resolute in her determination to make a difference. Her advocacy continues to inspire others as she navigates this painful chapter in her life, fighting for her daughters and countless others affected by SMA.
What is SMA?
Spinal Muscular Atrophy (SMA) is a condition that weakens the muscles by affecting the motor nerve cells in the spinal cord. There are several types of SMA, with Type 1 being the most severe and often leading to death by the age of five. The condition can be identified through a heel prick test, but it is not yet part of the routine screening in many parts of the UK. Jesy’s efforts to make SMA part of the heel prick test remain her primary focus, and she continues to fight for this critical change.
Jesy’s openness about her daughters’ diagnosis and her relentless pursuit of change for SMA awareness is a powerful reminder of the strength parents find in adversity, and the lasting impact of their efforts to protect and advocate for their children.
