“I’m no chem whiz, I just needed to save my son”: Unable to find medicine for his son’s Menkes syndrome, a father decides to make his own
If your child was diagnosed with a rare disease, and there was no readily available medicine to treat it, what would you do?
How far would you go to save your child?
Xu Wei, the protagonist of this story, is facing precisely these choices.
His son, Haoyang, has Menkes syndrome, a rare genetic copper-deficiency disorder that affects just one in 50,000 to 250,000 people. In order to prolong his son’s life, Xu started researching the disease from the ground up. He studied medicine and chemistry, and even, out of desperation, began producing his own drugs.
Here, Xu describes the series of “impossible tasks” he performed in order to save his child’s life.
Hello everyone, I’m Haoyang’s dad. I have a high school education, and previously ran a small online shop on Taobao. Due to a mutation on the ATP7A gene, my son suffers from a rare disease called Menkes syndrome. For him, I synthesized chemical compounds and researched gene therapy, looking for ways to keep him alive.
Founded in 2017 by Kou Aizhe, Story FM is one of the most renowned podcast in China. Each episode focuses on ordinary people’s lives and viewpoints, including the difficulties of marginalized people. Through intimate and private interviews, Story FM digs out first-person experiences and lets listeners immerse themselves in another person’s voice and feelings. You can listen to their podcast in Chinese on Ximalaya, Qingting FM, Apple Podcasts, and the 故事FM mini-app on WeChat.
