Jesy Nelson reveals the ‘hardest thing’ about her daughters’ SMA diagnosis

Jump to contentThank you for registeringPlease refresh the page or navigate to another page on the site to be automatically logged inPlease refresh your browser to be logged inAllNewsSportCultureLifestyleSinger Jesy Nelson discussed the profound difficulty of rewatching her new Prime Video documentary, Jesy Nelson: Life Changing, which chronicles her twin daughters' diagnosis with spinal muscular atrophy (SMA). Nelson's daughters, Ocean Jade and Story Monroe, were diagnosed with SMA1, a rare genetic condition that means they are unlikely to walk or gain neck strength. When asked what the “hardest thing” about her daughters’ diagnosis is, Nelson said: “You’ll never get used to it. I’m not even going to lie about that.”She described the emotional toll of re-watching the documentary and the daily challenges, such as the "horrendous" experience of changing her daughters' feeding tubes. Despite the difficulties, Nelson expressed that being a mother is the "best thing that ever happened" to her and her calling, finding support within her network and the SMA community. Nelson has been campaigning for SMA to be included in newborn screening, and the Department of Health announced that a national screening program will be rolled out across England from the end of this year. In fullJesy Nelson says she’ll ‘never get used to’ twin daughters’ SMA diagnosisMore bulletinsThank you for registeringPlease refresh the page or navigate to another page on the site to be automatically logged inPlease refresh your browser to be logged in

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