Jesy Nelson, a former member of Little Mix, bravely shares the heart-wrenching prognosis for her twins, Ocean and Story, who were diagnosed with Spinal Muscular Atrophy (SMA) type one at just nine months old. SMA is a genetic neuromuscular disease that causes progressive muscle weakness and wasting due to motor neuron loss. The singer, who recently split from the twins' father, Zion Foster, remains hopeful that her babies will defy the odds. She has been incredibly open about their diagnosis in the hope of spreading awareness about the condition.
In an interview with Jamie Laing on his Great Company podcast, Jesy explained that SMA causes the muscles to deteriorate and waste away. If treatment is not administered in time, the muscles will eventually die, affecting breathing, swallowing, and other vital functions, leading to death before the age of two. Despite the grim prognosis, Jesy remains resilient and determined to make the best of the situation.
Jesy has called for the NHS to expand the standard heel prick test to screen for SMA, as early treatment could have potentially saved her twins' legs. The tests cost around £1 each, and the twins could have benefited from early intervention. Additionally, Jesy revealed that her twins suffered from Twin-to-Twin Transfusion Syndrome (TTTS) while in the womb, which affected their development and required premature birth at 31 weeks.
Since becoming a mother, Jesy has discovered a newfound strength within herself. She feels a deep connection to her babies, viewing them as her whole heart and soul. This transformation has allowed her to overcome her fears and insecurities, which previously led to self-pity and days of isolation. Jesy's resilience and determination to fight for her children's well-being are truly inspiring.
Initially, Jesy never wanted children and had no maternal instincts. However, she was surprised to discover she was pregnant with twins two years into her relationship with Zion. The twins' birth was complicated by TTTS, which required Jesy to remain in the hospital for three months. Despite the challenges, she felt a profound sense of happiness and love for her babies.
Jesy's first sighting of her twins was through a plastic box with tubes and masks. She couldn't hold them for another day, which felt unnatural, especially when she heard them crying. The twins spent a month in the hospital, and Jesy was separated from them for the first week, which was incredibly difficult. She struggled with the idea of other women holding and caring for her babies, fearing that they might not recognize her as their mother.
Jesy's determination to protect her twins' identity led her to take extreme measures. She didn't want her own mother or sister to hold the babies, fearing that the more people held them, the less likely it would be that they would recognize her as their mother. Jesy was also advised not to compare her babies to other children of the same age due to their premature birth.
One day, while changing their nappy, Jesy noticed that the twins' legs didn't move at all. She returned to the hospital for tests, where the doctor suspected hypertonia (poor muscle tone) and ordered brain scans. Jesy's instincts confirmed her worst fears when she learned that SMA was the likely cause. She and Zion took the twins to a private pediatrician in London, who confirmed the diagnosis and advised immediate treatment.
Jesy has started a petition to advocate for newborn babies to be screened for SMA from birth. If SMA1 is treated pre-symptomatically, the disease can be largely prevented, and many children can develop with minimal or no symptoms. Jesy's bravery and advocacy are a testament to her love for her children and her commitment to raising awareness about SMA.
