Former Little Mix star Jesy Nelson has shared heartwarming new photographs of her twin daughters, Ocean and Story, following a significant development in her campaign for newborn health screening. The doting mother, who is thirty-four years old, posted the adorable images on social media, showcasing the infants' growing curls and playful moments.
Campaigning for Newborn Screening
Jesy Nelson revealed in January that her nine-month-old twins were both diagnosed with Spinal Muscular Atrophy Type 1, a rare and severe genetic neuromuscular condition. This disease affects motor nerve cells in the spinal cord, leading to progressive muscle weakness and a life expectancy of less than two years without medical intervention.
The singer has been tirelessly campaigning to include SMA testing in the standard newborn screening programme across England. Her efforts have now borne fruit with a major announcement from health authorities.
A Bittersweet Victory
"I just wanted to come on here to share some information and news that I have heard over the last couple of days," Jesy explained in a recent update. "As you know I've been campaigning to try and get SMA as part of the newborn screening here in England. My girls were diagnosed with SMA Type 1 and unfortunately they weren't tested at birth because it wasn't available here."
The breakthrough came when health officials confirmed that SMA screening will be rolled out across England starting in October. This development represents a crucial step forward for the entire SMA community, which has been advocating for this change for many years.
"They have now decided to roll that out in October for all babies in England to be tested at birth for SMA, which is absolutely incredible," Jesy continued. "I know it is a really big moment for the SMA community because this has been going on for years trying to get this passed, so yeah it is a real proud moment."
Treatment Options and Challenges
Currently, the National Health Service approves three treatments that can halt the progression of Spinal Muscular Atrophy. Nusinersen, marketed as Spinraza, requires injections directly into the spinal cord every four months to stimulate production of the crucial SMN protein.
Evrysdi offers a daily oral liquid treatment that similarly boosts SMN protein production, while Zolgensma provides a one-time infusion that delivers a healthy copy of the SMN1 gene to nerve cells. However, these interventions must be administered early to prevent irreversible nerve damage, highlighting the critical importance of early detection through newborn screening.
Geographical Disparities Remain
Despite this progress, Jesy Nelson expressed mixed emotions about the announcement. "It's just bittersweet because we're not fully there yet," she noted. "It's like literally a postcode lottery because it's not the whole of England. There'll be 163,000 babies that won't get screened - and that is a lot of babies."
The singer emphasized that geographical location should not determine whether infants receive this potentially life-saving testing. "If you live in a certain part of the country you're not going to get tested. There are truly life changing treatments out there so no baby should be an experiment - showing what the difference is. This shouldn't even be a thing. All babies should be getting tested and all babies should be living."
Personal Journey and Public Advocacy
Jesy Nelson has been remarkably open about her family's health journey, sharing regular updates about her daughters' condition on social media platforms. Before giving birth to the twins in May 2025, she allowed documentary cameras to film her pregnancy, and she plans to continue documenting their ongoing journey despite the challenging diagnosis.
In her recent social media posts, the singer joked that her daughters' long hair made them resemble "Cabbage Patch dolls," showing her ability to find moments of joy amidst the difficulties. Her positive mood reflects both the encouraging news about screening expansion and her dedication to raising awareness about Spinal Muscular Atrophy.
The Mirror newspaper has joined this important campaign, advocating for universal newborn SMA testing across England to ensure all infants can access the revolutionary treatments that effectively serve as cures when administered immediately after birth.
