{"id":360626,"date":"2026-01-09T09:21:10","date_gmt":"2026-01-09T09:21:10","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/360626\/"},"modified":"2026-01-09T09:21:10","modified_gmt":"2026-01-09T09:21:10","slug":"i-know-jesy-nelsons-pain-because-my-child-was-born-with-spinal-muscular-atrophy","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/360626\/","title":{"rendered":"‘I know Jesy Nelson’s pain \u2014 because my child was born with spinal muscular atrophy’"},"content":{"rendered":"

Little Mix singer Jesy Nelson took to Instagram and shared the heartbreaking news her twins, Ocean Jade and Story Monroe, had been diagnosed with spinal muscular atrophy (SMA)\"TylerTyler and Charlie Brown told how their toddler was left paralysed(Image: Jam Press)<\/p>\n

A father has told how his toddler was left paralysed<\/a> in both legs overnight due to the same condition<\/a> with which Jesy Nelson’s<\/a> twins have been diagnosed.<\/p>\n

Charlie Brown, 29, has issued an urgent warning to the Little Mix<\/a> star about what could lie ahead for little Ocean Jade and Story Monroe, who were born in May<\/a>. Charlie’s daughter Dani-Rae, now four, uses a wheelchair as her spinal muscular atrophy (SMA)<\/a> has got worse over time.<\/p>\n

But Charlie, who shares Dani-Rae with 26-year-old Tyler, has reassured the Little Mix singer, who expressed her grief on This Morning on Thursday<\/a>. Charlie said: “Our message to Jesy is that it will be okay \u2014 it’s not an easy road and we would never pretend otherwise.<\/p>\n

“All the little milestones will feel like winning the lottery over and over. The thing that needs to change is newborn screening, but also medical professionals’ knowledge on this condition.”<\/p>\n

READ MORE: Cat Deeley reveals emotional moment with ‘very upset’ Jesy Nelson backstage on This Morning<\/a>READ MORE: Mum of miracle SMA baby demands easy NHS test to stop more babies suffering<\/a>\"JesyJesy Nelson and her fianc\u00e9, Zion Foster, are pictured with the twins(Image: Jam Press\/@?jesynelson)\"Dani-Rae\"Dani-Rae, seen before being diagnosed, is a brave fighter(Image: Jam Press)<\/p>\n

Charlie has backed the Mirror’s campaign for every newborn to get a simple \u00a35 blood test on the NHS<\/a> to detect for SMA. The condition causes progressive muscle weakness and wasting.<\/p>\n

Dani-Rae became paralysed following a delayed diagnosis. Charlie, who is from Abertillery, south Wales, believes her plight \u2014 and those of families since \u2014 would have been lessened had such a blood test been available.<\/p>\n

Charlie added: “If diagnosed and treated early, life is very different; the disease is stopped before it even starts. Or at least it’s caught early enough. While we are angry about our delayed diagnosis, we’re more angry that it’s still happening to other families three years later.”<\/p>\n

\"TheThe little girl uses a wheelchair as the condition has worsened(Image: Jam Press)\"TheThe family, from south Wales, want to raise awareness(Image: Jam Press)<\/p>\n

Although little Dani-Rae will never be able to walk again, Charlie continues to champion the detection of SMA and raise awareness of it. The little girl suffers from type 1, the most severe type of SMA, which can sadly cause fatal respiratory failure in young children as the muscles around the lungs can’t cope with expansion.<\/p>\n

There are treatments available to slow down the deterioration of muscles and give Dani-Rae a chance at independence, such as Zolgensma gene therapy.<\/p>\n

Dad-of-two Charlie added: “She will never be able to walk again but we are going to try everything to give her the best chance possible of regaining as much movement back as she can.<\/p>\n

“There are two types of treatment that could save her; gene therapy to hopefully stop further deterioration, and physio and hydro treatment to keep her muscles moving and hopefully build them up.<\/p>\n

“We want her to have as much independence as possible. It’s heartbreaking to see her frustrated and we want her to be able to do things for herself. We want to share our story with other parents. If you do think there is something wrong with your child, share your concerns with the doctor because SMA can be caught early on.”<\/p>\n","protected":false},"excerpt":{"rendered":"Little Mix singer Jesy Nelson took to Instagram and shared the heartbreaking news her twins, Ocean Jade and…\n","protected":false},"author":2,"featured_media":360627,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[32],"tags":[6491,96,102,135777,137536,56,54,55],"class_list":["post-360626","post","type-post","status-publish","format-standard","has-post-thumbnail","category-celebrities","tag-celebrities","tag-entertainment","tag-health","tag-jesy-nelson","tag-sma-test","tag-uk","tag-united-kingdom","tag-unitedkingdom"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/360626","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=360626"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/360626\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/360627"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=360626"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=360626"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=360626"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}