This is a deeply personal and thought-provoking story about the decision to give a child a potentially life-saving gene therapy. The author, Jo Kaur, is a civil rights attorney turned drug developer who founded the Riaan Research Initiative to develop gene therapy treatments for Cockayne syndrome, a rare and fatal pediatric genetic disorder. Her son, Riaan, was diagnosed with the disease at 15 months old, and his life expectancy was given as five years. The story details the emotional and challenging journey of raising funds, developing the therapy, and ultimately deciding whether to give it to Riaan. The author reflects on the difficult decision, the risks involved, and the love and determination that drove her to pursue this treatment. It's a powerful testament to the lengths parents will go to for their children and the complex ethical considerations that arise in rare disease treatment.
