Pop star Jesy Nelson recently disclosed the unsupportive reaction she received from medical professionals when she raised concerns about her twin babies’ health. The former member of the popular group Little Mix, aged 34, shared that her daughters, Ocean Jade and Story Monroe, have been diagnosed with spinal muscular atrophy type 1, a rare genetic condition that leads to muscle weakness and can be life-threatening if not addressed promptly.
Jesy, who gave birth to the twins prematurely at 31 weeks with her partner Zion, recounted how doctors initially dismissed her worries, attributing the babies’ condition to their premature birth and advising against comparing them to other infants, despite noticeable differences in movement. It was Jesy’s mother, Janice White, who first suspected an issue, but reassurances from health visitors initially allayed concerns, particularly regarding feeding.
In a poignant Instagram post, Jesy shared her realization that her daughters were not displaying typical leg movements, contrary to medical advice she had received post-NICU discharge. Despite medical reassurances, Jesy persisted in seeking help as the twins’ feeding patterns raised further alarms. Subsequent testing confirmed the diagnosis of SMA Type 1, leading Jesy to describe this period as the most heart-wrenching in her life, with her perspective drastically shifting.
Jesy expressed grief over the altered trajectory she envisioned for her family while also expressing gratitude for her children, believing they will defy expectations with appropriate support. Leveraging her platform, Jesy aims to raise awareness of SMA’s early indicators, emphasizing the importance of timely testing to preserve muscle function in affected individuals.
Spinal muscular atrophy results from a mutation in the SMN1 gene, affecting nerve cells that regulate muscle movement in the spinal cord. While there is no cure for SMA, managing symptoms through available treatments is crucial. Early detection is vital to preserving unaffected muscles, as muscle atrophy is irreversible once it begins.
Recognizing common signs like floppiness, limited leg movements resembling frog legs, distended bellies, and rapid breathing, Jesy underscores the significance of parental vigilance.