The article reflects on a journalist's personal experience as they react to a groundbreaking story about personalized gene-editing treatment for a young boy with a rare genetic condition. The author relates this advancement to their son, Henry, who suffered from Rett syndrome, a genetic disorder caused by a mutation in the MECP2 gene. The author expresses a profound sense of loss and frustration, wishing that such medical breakthroughs could have come earlier to help their son. Overall, the article captures the intersection of personal grief, journalistic passion, and scientific progress.
Genetic diseases tease you. You stare into a glass box. You can see the culprit, but cannot touch him.
Henry, who passed away two years ago this summer, had one of those other uncommon genetic diseases. It is called Rett syndrome.
The technique used on a 9½-month-old boy with a rare condition has the potential to help people with thousands of other uncommon genetic diseases.
He received an infusion made just for him and designed to fix his precise mutation.
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