- Singer 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.
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