傑西尼爾森勇敢抗爭：雙胞胎被診斷出患有罕見肌肉疾病

Jesy Nelson, the former member of the popular girl group Little Mix, has opened up about a very personal and difficult experience. Last May, Jesy and her partner, musician Zion Foster, welcomed twin daughters named Ocean Jade and Story Monroe. The twins were born prematurely, which means they arrived earlier than expected. Recently, Jesy shared on social media that her daughters have been diagnosed with a rare genetic condition called Spinal Muscular Atrophy, or SMA. This disease is known as the most severe muscular disease and affects every muscle in the body, including those needed for moving, breathing, and swallowing. Jesy explained that she first noticed something was wrong when her daughters were not moving their legs as much as other babies and were having trouble feeding. After months of stressful doctor visits and tests, the family learned that both girls have SMA type 1. This is the most serious form of the disease, and if it is not treated quickly, children with SMA type 1 often do not live past the age of two. Jesy and Zion took their daughters to Great Ormond Street Hospital in London, where doctors told them that the girls would probably never be able to walk or even hold up their heads. This means they will be disabled for life. Jesy said she is grateful that her daughters have started treatment, because without it, their lives would be in danger. She has had to learn how to use breathing machines at home to help her daughters, which has been very hard for her as a mother. Jesy described the past three or four months as the most heartbreaking time of her life. She said she feels like her whole world has changed, but she still believes her daughters can overcome the odds with the right help and support. Jesy decided to share her family's story to raise awareness about SMA and to help other families get a diagnosis as quickly as possible. Her partner, Zion, also posted a photo of the twins smiling, saying that they are still happy even with all the challenges they face. Jesy, who is now 34 years old, gave birth to her twins at 31 weeks and had some rare complications during her pregnancy. She has said that becoming a mother made her realize how strong her body is, and she is very proud of herself for bringing her daughters into the world. After leaving Little Mix in 2020, Jesy has continued her music career as a solo artist. SMA is a progressive disease that causes muscles to get weaker over time. If it is not treated, it can be deadly for babies. In 2021, a new medicine called Zolgensma was approved in the UK to treat babies with SMA. This medicine gives the body a healthy copy of the gene that is missing in people with SMA, but it must be given early before too much damage is done. Right now, doctors in the UK only check for SMA in babies if they have a brother or sister with the disease. Some groups want all newborns to be tested for SMA, so they can get treatment as soon as possible. In 2024, about 47 babies in the UK were born with SMA, and many people carry the gene that causes the disease without knowing it. Jesy hopes that by sharing her family's journey, more babies can get the help they need and have a better chance at life.