Andy & Sofia

Book excerpt: In an incubated petri dish in a Boston laboratory, a cluster of eight living cells holds the key to a daring new era of medical science. These cells come from a human embryo, containing genetic material from my wife, Paulina, and me, obtained through in vitro fertilization (IVF). Research using these cells holds enormous potential to cure a fatal disease, saving the lives of countless children and relieving their families of unspeakable pain. We lived that pain ourselves. When our son was born we didn't know what a tortuous road stretched ahead of us- how our baby would suffer, and how we'd suffer with him. We didn't know he'd spend nearly 1,000 days in seven different hospitals, see more than 300 doctors and swerve close do death many times. We didn't know we'd have to take matters into our own hands to find the medical miracle that would save him. Nine years ago, Paulina and I embarked on a desperate quest. We needed to create a baby with the right genetic profile, whose umbilical cord blood could save our 2-year-old son, Andy, dying from a rare genetic disease. The baby would also have to be free of the inherited disease killing our son. After three years and five IVF cycles, and with the critical intervention of a novel medical technology called pre-implantation genetic diagnosis (PGD), our daughter, Sofia, was born. Her cord blood stem cells, transplanted into her brother via blood transfusion, replaced his faulty immune system and saved his life. Today we are blessed that Andy, 11, and Sofia, 6, are both healthy, beautiful children. In gratitude, Paulina and I donated the remaining frozen IVF embryos-the ones that could never be used because they carried the flawed gene causing the disease-to the Stem Cell Research Program at Children's Hospital Boston, where Andy's disease was diagnosed and cured. Scientists there were able to develop two new stem cell lines whose unique genetic properties will help researchers learn how Andy's disease, and many others, develop. From that knowledge will come treatments and cures. My wife and I know our story and its difficult moral choices is highly controversial. We've chosen to share it to give the issue a human face and voice-and to give hope to other families facing similar dilemmas.