Jesy Nelson was overjoyed as she celebrated a huge milestone with one of her twin daughters, who has been diagnosed with spinal muscular atrophy (SMA). In her latest Instagram share, she revealed that one of her twins has sat up straight in her wheelchair for the first time.
Sharing a snap on the social media platform, Jesy said: "She looks like such a big girl with no tube on her face and sitting up right in her chair."
Diagnosis and Campaigning
It comes after Jesy revealed in January that her now one-year-old twins, Ocean and Story, had been diagnosed with SMA Type 1, a rare muscle-wasting condition. According to the NHS, Type 1 SMA means sufferers cannot sit, making this milestone particularly significant.
Since their diagnosis, the former Little Mix singer has been campaigning for newborn testing to be rolled out across the NHS. Last month, Jesy revealed she was "heartbroken and outraged" as she vowed to "keep on fighting" for the testing. She attended parliament for the MPs' debate on SMA screening from birth, but the decision incensed her after it didn't completely go to plan. Currently, only 72 per cent of the country will have access to newborn screening when it is introduced in October.
Jesy revealed she felt let down by the decision. Holding back the tears after the meeting, Jesy said: "I'm going to be completely honest, I was absolutely fuming. I feel so let down. I have no more words. It's sad. It's so sad, like our children's lives could look so different, and to know that we are still debating it. We are debating whether SMA future children should be disabled or not. Based on where you live, how does that make sense? How is that fair? How is that fair?"
Documentary and Emotional Reaction
Footage of Jesy discovering the devastating diagnosis of her twins was released last week as her documentary gets ready to air. The songstress was seen sobbing as she said: "I don't know how I'm going to do this." A doctor had told her: "The genetic testing came back positive for Spinal Muscular Atrophy." The star was filmed holding her head in her hands as she said: "I can't believe this is happening."
The heartbreaking scenes were filmed for part of Jesy Nelson: Life Changing. The Amazon Prime Video cameras caught her heartbreaking reaction to the awful news as she said she "can't believe this is happening". She revealed her whole life has changed following the diagnosis. With her head in her hands, she said: "I don't know how I'm going to do this. I feel like I'm going to be heartbroken for the rest of my life."
