Health Secretary Wes Streeting has expressed his gratitude to Jesy Nelson and the Mirror for shedding light on the challenging situation faced by the pop star’s twin daughters. Jesy Nelson shared the heartbreaking journey of her twin babies losing the ability to use their legs shortly after birth due to being diagnosed late with type 1 spinal muscular atrophy. This condition could have been detected early with a simple and cost-effective test. The Mirror has been advocating for mandatory testing of newborns for this condition, a cause they first championed five years ago.
Gene therapy could have halted the progression of the disease if identified promptly. Unfortunately, the twin girls, Ocean and Story, now eight months old, may never regain the ability to walk. Health Secretary Wes Streeting commended Jesy Nelson for bravely speaking out about their ordeal, acknowledging the importance of expanding screening efforts to identify and support families affected by spinal muscular atrophy.
The UK National Screening Committee has proposed a comprehensive study on newborn screening for spinal muscular atrophy, with an ongoing call for research. In a significant move, the NHS will conduct a trial to screen hundreds of thousands of babies for this condition. The advancements in treatments for spinal muscular atrophy offer hope for affected children to not only survive but thrive.
Unlike many developed countries, Britain does not routinely screen infants for spinal muscular atrophy. The Mirror is advocating for a change in policy, proposing a cost-effective “Jesy test” priced at just £5 per screening. Jesy emphasized the importance of knowing that life-changing interventions exist for her children, underscoring the necessity of early detection.
Jesy, who hails from Romford, East London, gained fame after winning the X Factor in 2011 with Little Mix. Following a successful career with five UK number one hits, she departed the group in December 2020 to pursue a solo career. Jesy, alongside her partner Zion Foster, welcomed Ocean and Story prematurely at 31 weeks in May, with Zion by her side.