Former Little Mix star Jesy Nelson said she “couldn’t stop crying” after watching her new, Prime Video documentary as it “mentally takes me back”.<\/p>\n
Jesy Nelson: Life Changing follows the 35-year-old singer as she fights to change UK newborn screening laws after her twins, Ocean Jade and Story Monroe, were diagnosed with spinal muscular atrophy (SMA).<\/p>\n
Nelson revealed that her daughters had the rare genetic condition in January, saying they are unlikely to be able to walk or gain neck strength.<\/p>\n
Appearing on This Morning, the singer opened up about how difficult it was to watch back her latest documentary, which chronicles her daughters\u2019 SMA1 diagnosis and her subsequent campaign efforts.<\/p>\n
Nelson said: “I\u2019ve only watched it once, and I can\u2019t watch it again.<\/p>\n
“Me and my mum watched it the first time, and after we watched it\u2026 we just couldn\u2019t stop crying.<\/p>\n
“It was crazy because I know that that\u2019s my life, but when it\u2019s crammed into an hour\u2026 when you\u2019re watching it from like an outside perspective, ‘oh, I can\u2019t believe that\u2019s my life\u2019.<\/p>\n
“It\u2019s overwhelming because when you\u2019re living it every day, you\u2019re in autopilot mode. But then when you see it, you\u2019re like, \u2018oh my God\u2019.<\/p>\n
“So, I\u2019ve only watched it once and I don\u2019t know if I should again, because it mentally takes me back.”<\/p>\n
\n
When asked by host Dermot O\u2019Leary what the “hardest thing” about her daughters\u2019 diagnosis is, Nelson said: “You\u2019ll never get used to it. I\u2019m not even going to lie about that.<\/p>\n
“And they don\u2019t know no different, which I think is super sad as well.”<\/p>\n
The singer explained how “horrendous” it is when changing her one-year-old daughters\u2019 nasogastric tubes, which are used to feed them.<\/p>\n
Nelson said: “They can\u2019t breathe when they\u2019re doing it, and to have to watch your child go through that\u2026<\/p>\n
“You can\u2019t help them, and when they\u2019re looking at me I feel like I\u2019m allowing someone to do something bad to them.”<\/p>\n
The star also reflected on the impact her daughters have had on her life, and was asked whether she would want to change things.<\/p>\n
Nelson said: “I\u2019m not going to lie, of course I\u2019d have (my daughters) without this disease. Why wouldn\u2019t I?<\/p>\n
“But in terms of having them and being a mum? Best thing that ever happened to me. I feel like this is what I was meant to do, this is my calling.<\/p>\n
“They\u2019re just like my whole world. I wouldn\u2019t have it any other way.”<\/p>\n
\n
She added that she has “amazing friends and family who are my support network” and that the help she has received from the SMA community has been “a relief”.<\/p>\n
“When someone completely gets it\u2026 it\u2019s like a weight lifted off my shoulders a little bit,” she said.<\/p>\n
Since the twins\u2019 diagnosis, Nelson has been campaigning for the condition to be added to the newborn, blood spot, screening test as early treatment can help avoid some of its most devastating effects.<\/p>\n
The British Department of Health announced on Thursday that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of this year.<\/p>\n
Hundreds of thousands of babies will be screened as part of the simple, heel-prick, blood test shortly after birth.<\/p>\n
Source: Press Association<\/p>\n","protected":false},"excerpt":{"rendered":"Former Little Mix star Jesy Nelson said she “couldn’t stop crying” after watching her new, Prime Video documentary…\n","protected":false},"author":2,"featured_media":530740,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[32],"tags":[321,93,61,60],"class_list":["post-556207","post","type-post","status-publish","format-standard","has-post-thumbnail","category-celebrities","tag-celebrities","tag-entertainment","tag-ie","tag-ireland"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/556207","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=556207"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/556207\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/530740"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=556207"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=556207"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=556207"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}