Campaign Story

My name is Sophia and I am a carrier of Hemophilia B – a rare medical condition in which the ability of the blood to clot is severely reduced, causing the sufferer to bleed severely from even a slight injury. About 80% of those with the disorder are male, and a female who inherits one affected X chromosome has a 50% likelihood of passing on hemophilia to a child assigned male at birth. Even with proper treatment, the average life expectancy for a male with hemophilia is about 10 years less than healthy men, and around 30% of those with the disease will die from a bleeding-related incident. As I am an obligate carrier of hemophilia B, my fiancé and I are seeking out IVF treatment so that we can undergo preimplantation genetic testing (PGT).

My fiancé Nick works with children in special education as a school psychologist, while I work with students as an academic counselor at a public university. We have both dedicated our lives to public service and helping support our future generations. Nick and I are now looking to grow our own family, but financially, IVF is quite a roadblock. As many of you know, the treatments and medications are quite expensive and are not covered by insurance. We recognize this is a big ask, but we are so grateful even for the smallest contribution towards our goal.