Want to have children
Previously made plans for the future are under pressure, including Julia’s desire to have children. “My greatest fear is to be a mother and get ALS. I don’t want my future children to lose their parent so young. The idea makes me sick.”
There is a genetic IVF process in which the ALS gene in embryos is neutralized. For now, Julia and her boyfriend want to have children naturally. “I understand that people think: this is selfish, why wouldn’t you take action so that your child does not become a gene carrier? But when you experience this yourself, you also feel a necessity: I want to leave something of myself in this world, my whole self with all the good and bad sides.”
Also, the ALS gene may not be fully repairable in embryos. “And what if the child turns out to have the gene of another terrible hereditary condition? I don’t know if I can make it a hundred percent good choice. Moreover, if my parents had used genetic IVF, I would not have lived. In I have enjoyed so much these twenty-six years, I don’t want to deny that to a future child. I just hope that before we seriously think about children, a cure is available.”
2023-12-03 11:22:09
#Julia #chance #fatal #disease #ALS #body #time #bomb
