The parents of two children diagnosed with a severe muscle-wasting illness have reached out to former Little Mix member Jesy Nelson, expressing empathy and solidarity. Paola and Rhys Davie’s daughter Emma, and Urszula and Daniel Kaniewfka’s son Bartosz, share a similar condition called Spinal Muscular Atrophy (SMA) with Jesy’s twins. The couples extended their support to the singer while endorsing a campaign by the Mirror advocating for mandatory screening of all newborns for SMA, following Scotland’s recent implementation of such screening.
Paola, mother of two-year-old Emma, who was diagnosed in 2024, empathized with Jesy’s initial heartbreak upon receiving the diagnosis, urging her to take things one step at a time. Urszula, mother of five-year-old Bartosz, also shared words of comfort, emphasizing the enduring love and joy that lie ahead despite the challenges.
Emma and Bartosz, akin to Jesy’s children Ocean and Story, suffer from SMA type 1, the most severe form of the disease characterized by nerve cell deterioration affecting muscle control. Late diagnoses of the children imply long-term mobility issues that could have been prevented with early screening and intervention.
The recent decision by the Scottish government to include SMA screening in newborn blood spot tests has sparked calls for similar measures in England. Paola highlighted the benefits of early screening, citing her Italian heritage where SMA screening at birth is commonplace.
Both Emma and Bartosz underwent groundbreaking gene therapy called Zolgensma at London’s Evelina Children’s Hospital, which has shown promising results in halting SMA progression. Despite potential mobility limitations, the children have displayed significant improvement post-treatment, with Bartosz even achieving milestones like crawling and standing.
The Mirror has been instrumental in raising awareness about the absence of SMA screening in the NHS newborn test, a deficiency that puts UK infants at a disadvantage compared to other developed nations. The UK’s delayed adoption of newborn SMA screening contrasts with the practices in 46 other countries, including the US and most of Europe.
While the UK National Screening Committee cited the need for further research before implementing SMA screening, the urgency for early detection and treatment remains critical. An ongoing NHS pilot in select English regions aims to assess screening outcomes, with a nationwide rollout potentially occurring by 2031.
Through personal experiences and advocacy, parents like Paola and Urszula are championing efforts to ensure that newborns are screened for SMA, paving the way for enhanced care and improved outcomes for affected children and their families.
