In 1995 Laurie Strongin’s son Henry was born with Fanconi anemia, a rare genetic disease most common in Ashkenazi Jews. The disease, as Strongin and her husband quickly learned, is almost always fatal. But scientific advancements gave them the hope that they might be able to save their newborn son. Pioneering the use of an embryo-screening technique, Strongin struggled for years to give birth to another child whose bone marrow could be used to cure Henry. But in the end, she ran out of time.
Strongin, author of the book “Saving Henry: A Mother’s Journey,” wrote this essay for the Forward’s annual special section on genetics . She also spoke recently with the Forward for this audio slideshow: