Health Secretary Wes Streeting expressed his gratitude to Jesy Nelson and the Mirror for raising awareness about the challenging situation faced by the pop star’s twin daughters. Jesy Nelson revealed how her twin babies experienced a progressive loss of leg function shortly after birth due to a delayed diagnosis of type 1 spinal muscular atrophy. The Mirror has been advocating for newborns to be screened for this condition, emphasizing the importance of early detection.
Gene therapy could have potentially halted the progression of the disease if diagnosed promptly. Unfortunately, Jesy’s daughters, Ocean and Story, now eight months old, may never regain the ability to walk. Wes Streeting commended Jesy for her bravery in sharing her story, highlighting the need for improved screening measures for spinal muscular atrophy.
The UK National Screening Committee has recommended a comprehensive study on newborn screening for SMA, with plans underway for NHS to conduct mass screenings of infants. Streeting noted the advancements in SMA treatments, emphasizing the positive outcomes seen in affected children.
Unlike many other developed countries, Britain does not routinely screen newborns for SMA. The Mirror is advocating for a cost-effective “Jesy test” at £5 per screening to be implemented nationwide. Jesy emphasized the importance of taking action when life-changing interventions are available for children with SMA.
Jesy, originally from Romford, East London, gained fame after winning X Factor in 2011 with Little Mix. Following her departure from the group in December 2020, she embarked on a solo career, collaborating with artists like Nicki Minaj. Jesy gave birth prematurely to Ocean and Story in May, with her partner Zion by her side.
