A man shared the story of his young child losing the ability to use both legs overnight due to the same condition that Jesy Nelson’s twins have. Charlie Brown, 29, urgently reached out to Little Mix star about the future for Ocean Jade and Story Monroe, born in May. His daughter Dani-Rae, now four, has spinal muscular atrophy (SMA) that has worsened but has stabilized. Charlie, a parent with Tyler, reassured Jesy, who recently expressed sorrow on This Morning. He emphasized the challenging journey ahead but highlighted the importance of celebrating small victories. Charlie supported the Mirror’s campaign for all newborns to undergo a simple £5 blood test for SMA screening.
Dani-Rae’s paralysis resulted from a delayed diagnosis, leading Charlie to advocate for early detection through newborn screening. While Dani-Rae won’t walk again due to SMA type 1, treatments like Zolgensma gene therapy can slow muscle deterioration. Charlie remains committed to enhancing awareness of SMA and exploring treatments to improve Dani-Rae’s mobility and independence. He urged parents to communicate concerns with doctors early for prompt intervention against SMA.