Jesy Nelson has revealed that her twin daughters' treatment for Spinal Muscular Atrophy (SMA) was delayed due to illness, potentially causing permanent nerve and muscle damage. The former Little Mix star shared the update in her new Prime Video documentary series, Jesy Nelson: Life Changing.
Diagnosis and Treatment Delay
In January, Nelson bravely announced that her daughters, Ocean and Story, had been diagnosed with SMA Type 1. She explained that the twins were scheduled for a gene-therapy infusion earlier this year but had to miss it after falling ill. Story was rushed to hospital with pneumonia, and soon after, Ocean became unwell with another illness.
"Not long after we got the diagnosis, they were booked in to have their treatment. Then Story got pneumonia and was really struggling to breathe. She started choking so we had to rush her into hospital. It breaks my heart because she's so vulnerable. That's when we were told that she can't have the treatment," Nelson said in the documentary.
Risks of Delayed Treatment
Despite the risk of permanent nerve and muscle damage, doctors decided the infants were not well enough to undergo the treatment. Nelson added: "That was when she got given her breathing machine. She came home and then Ocean got ill." The children's father and Nelson's ex-partner, Zion Foster, expressed his struggle, saying: "I'm not equipped to deal with this. I'm out of my depth; emotionally, physically and mentally."
Emotional Motherhood Moments
Nelson shared an emotional post on social media, featuring a clip of herself on a park swing with one of her daughters wrapped in a blanket. She captioned the image: "My dream is to one day push my girls on a swing all by themselves." She added: "But for now we enjoy it just like this," accompanied by an emoji face with welling up eyes and a white heart.
Advocacy for Newborn Screening
Nelson continues to advocate for earlier SMA testing in the UK. She was left "heartbroken and outraged" after the government decided not to offer universal newborn screening for the condition earlier this year. Currently, only 72% of the country will have access to newborn screening when it is introduced in October. Nelson attended a parliamentary debate on SMA screening and vowed to "keep on fighting" for the testing.
