Pop singer Jesy Nelson recently revealed the troubling encounter she had with medical professionals when expressing concerns about her twin babies. The former Little Mix star shared that her daughters, Ocean Jade and Story Monroe, were diagnosed with spinal muscular atrophy type 1, a rare genetic condition characterized by muscle weakness that can be life-threatening if not detected early.
Jesy, 34, who delivered the twins prematurely at 31 weeks with her partner Zion, recounted how doctors initially dismissed her worries, attributing the babies’ conditions to prematurity. Despite noticing differences in their movement compared to other newborns, Jesy was advised not to compare them. It was her mother who raised alarms, but health visitors reassured the couple that the babies were healthy.
In a poignant Instagram post, Jesy described the emotional journey of discovering her daughters’ limited leg movement and feeding difficulties. After numerous tests, the twins were diagnosed with SMA Type 1, leading Jesy to express the immense heartbreak and life-changing impact of the diagnosis.
Determined to raise awareness, Jesy emphasized the importance of recognizing early signs of SMA and highlighted the significance of prompt diagnosis and treatment. She called attention to the crucial role of the SMN1 gene mutation in causing SMA, which affects nerve cells vital for muscle movement and can result in progressive muscle deterioration.
While there is no cure for SMA, managing symptoms through available treatments is essential. Jesy’s advocacy aims to educate parents about potential indicators like muscle weakness, abnormal leg movements, bloated bellies, and rapid breathing. By sharing her family’s story, Jesy hopes to empower others to seek timely intervention and support for SMA.