In a poignant display of parental love and resilience, musician Zion Foster has shared a heartwarming video of his daughter Story Monroe during tummy time, praising his "little fighter" as the eight-month-old twins battle a rare genetic condition. The 27-year-old posted the touching clip on Instagram this Tuesday, captioning it with the words: "Proud of you always Story Bear. My lil fighter" as his daughter wriggled around on the floor.
Devastating Diagnosis for Nelson-Foster Twins
The emotional moment comes after both Story Monroe and her twin sister Ocean Jade received a devastating diagnosis of Spinal Muscular Atrophy Type 1 shortly after birth. This rare neuromuscular disorder causes progressive muscle weakness and atrophy, with Type 1 representing the most severe form of the condition. Symptoms typically include extreme muscle weakness, swallowing difficulties, and respiratory challenges that can significantly impact quality of life.
Reports indicate that Zion Foster and former Little Mix singer Jesy Nelson, 34, have recently separated, though sources confirm they remain united in their focus on their daughters' wellbeing. The split reportedly occurred just weeks after the couple revealed their twins' diagnosis to the public, with both parents maintaining a strong co-parenting relationship centred around their children's complex medical needs.
Nelson's Emotional Campaign for Change
Jesy Nelson has transformed her personal heartbreak into a powerful campaign for systemic change within the UK's healthcare system. The singer made headlines this week after meeting with Health Secretary Wes Streeting, 42, in an emotionally charged discussion about newborn screening for SMA Type 1. During their conversation, which was filmed for This Morning, Nelson broke down in tears while explaining that "no parent should have to go through this" ordeal.
The Screening Gap in UK Healthcare
The fundamental issue at the heart of Nelson's campaign revolves around the absence of routine SMA testing within the NHS newborn blood spot screening programme, commonly known as the heel prick test. While the test currently screens for nine rare conditions, SMA Type 1 remains excluded despite medical advances that have created effective treatments when administered early.
Nelson revealed to Streeting that her daughters were not tested for SMA at birth because the screening isn't standard practice across the United Kingdom. She emphasised the heartbreaking reality that earlier detection could have dramatically altered her children's prognosis, stating: "I could have saved their legs" if the condition had been identified sooner.
Political Response and Evaluation Timeline
During their emotional meeting, Health Secretary Wes Streeting appeared visibly moved by Nelson's testimony and the supporting video evidence she presented. The Labour MP acknowledged his previous lack of awareness about SMA screening advancements, admitting: "I didn't know until your experience and your campaign."
Streeting revealed that an evaluation study is currently underway to assess the viability of incorporating SMA testing into routine newborn screening. However, the timeline presents significant concerns, with the evaluation not due to report until January 2028 and initially planned to involve only two-thirds of babies during the trial period.
The Health Secretary committed to investigating whether the evaluation could begin sooner and expand to include all babies during testing, promising Nelson: "I'll be a dog with a bone on this." He acknowledged feeling "a responsibility to the whole SMA community" following their powerful conversation.
Daily Realities of SMA Care
In her first television interview since the diagnosis, Nelson provided heartbreaking details about the daily challenges her family now faces. She described how her home has transformed into what resembles "a hospital," with medical equipment filling her hallway and complex care routines dominating family life.
The singer revealed that Story requires a breathing machine at night because she isn't strong enough to breathe independently during sleep. Both twins need cough assist machines to help clear their airways and require feeding tubes for nutrition and secretion management. Nelson has had to rapidly learn these medical procedures while processing the emotional impact of her daughters' prognosis.
"My whole life has just completely changed," Nelson told This Morning presenters Cat Deeley and Ben Shephard. "I just want to be their mum, I don't want to be a nurse. All I can do is just try my best to be there for them."
Family Support and Public Advocacy
Despite the couple's reported separation, both parents remain united in their advocacy for SMA awareness and screening reform. Zion Foster recently shared a self-written poem on Instagram that beautifully captured his journey toward accepting his daughters' condition while celebrating their unique strengths.
In the poignant piece, Foster reflected: "My worry isn't the milestones, isn't forcing life to live a different way. My worry is quieter than that, deeper. It's about accepting you, loving you for who you are right now, without conditions." He went on to praise Nelson's campaigning efforts, calling her "the definition of a superwoman" for addressing what he described as "a huge flaw in our healthcare system."
Medical Context and Treatment Advances
Spinal muscular atrophy is caused by a missing or faulty SMN1 gene, which leads to the deterioration of motor neurons controlling muscle movement. According to NHS information, SMA "gets worse over time, but there are medicines and other treatments to help manage the symptoms."
Medical experts emphasise that when SMA Type 1 is treated pre-symptomatically – at or near birth – the disease progression can be significantly altered, with many children developing minimal or no symptoms. This makes early detection through newborn screening particularly crucial for improving long-term outcomes.
Campaign Momentum and Public Response
Nelson has launched a petition calling for SMA to be added to the newborn blood spot screening test, leveraging her platform to amplify a cause that has long been championed by the SMA community. She expressed frustration that it has taken a celebrity with "a few million followers" to bring serious attention to the issue, questioning why families have had to "scream and shout about it for many years" without adequate response.
The singer remains determined to continue her advocacy, stating: "I'm going to shout to the rooftops about this. I could have saved their legs... I don't think I'm ever going to get over this or accept it, but I'm going to try my best to make change." Her campaign has already sparked renewed political attention and public awareness about this rare but devastating condition.
