My Child Has A Rare Disease. How Do I Keep Going? | By Your Side - Part 1/3

By CNA Insider

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This episode follows three families raising children with rare medical conditions. Three-year-old Freida has West syndrome, which causes frequent seizures and affects her physical development and communication. Her parents adapt their lives around her care while celebrating every small improvement. Nine-year-old Zoe has severe Harlequin ichthyosis. Despite living with constant skin shedding and having no fingers, she remains independent and determined to try things for herself, supported by her father, grandmother and teachers. Fourteen-year-old Hazel also has West syndrome. Her mother Dowin shares her difficult journey from despair and helplessness to acceptance after connecting with other families. Through these stories, the episode shows how families face uncertainty, overcome challenges and find strength in one another. Above all, it is a story about love, perseverance and the importance of staying by their children’s side. 00:00 Introduction 01:46 How a baby was diagnosed with We