In the Fall of 2000, Denver’s Lisa and Jack Nash genetically engineered a baby in an effort to save their dying little girl. Pastors and pundits said it was the first step down a stem-cell-paved road to Hell. Five years later, the Nashes give us an exclusive look at Heaven.
Jack and Lisa knew almost immediately they were meant to be together. Both raised in Denver, they met in the summer of 1984, on a blind date orchestrated by their mothers. The couple fell in love quickly, and rather than break up the romance, Lisa, then a 17-year-old champion synchronized swimmer, gave up a scholarship to Brown University and opted for the University of Colorado. Meanwhile, 19-year-old Jack transferred from Arizona State University back home to Arapahoe Community College. Five years after their first date, the couple wed at BMH Synagogue on July 16, 1989.
But beneath the surface of the Nashes' idyllic union a chromosomal storm was brewing. Each of them had the recessive gene for a deadly disease. If only one of the two newlyweds had this particular DNA the disease would have remained dormant and the couple would have produced a healthy child; however, because both of them possessed this uniquely flawed DNA, there was a strong probability that their child would be born with an almost certainly fatal genetic illness. Jack and Lisa learned all of this 21 days after Molly's first birthday, in July 1995, when she was officially diagnosed with Fanconi anemia.
In the year since her birth, the Nashes had tirelessly researched the disease and contacted the Fanconi Anemia Research Fund in Oregon for direction. Lisa's college courses in molecular and cellular developmental biology and her NICU experience were invaluable when it came to deciphering the science. The more Jack and Lisa learned about FA, the more determined they became to beat it. They postponed having another child. The idea of trying to conceive and perhaps give birth to another child with a death sentence struck the Nashes as cruel and selfish.
So, heading into that official diagnosis in the summer of '95, Lisa and Jack were prepared for grim news, but they were devastated when they learned Molly had the deadliest strand of FA: Type C—the Jewish version. In the general population, 1 in 300 people is a carrier of FA, but among Ashkenazi Jews (those with ancestral ties to Eastern Europe), the odds increase to 1 in about 90. Jack and Lisa are both Ashkenazi Jews. And because both are carriers for the disease, there was a whopping 25 percent chance they would have a baby with FA-Type C. Children afflicted with this variation are born with more birth defects, get sick sooner, and, without a bone marrow transplant, die earlier. Jack and Lisa could expect Molly's bone marrow to begin failing at the age of 3.
Already, in Molly's first year, she'd spent countless days in the hospital. She was born with a platelet count (an indicator of bone marrow health) of just 53,000, when it should have registered 150,000 to 400,000. When Molly was 1 month old, she was fit with a brace to force the development of nonexistent hip sockets. Built like a booster seat, the device applied nine months of constant, grinding pressure on her soft hipbones. Gastrointestinal problems meant she couldn't eat properly. Her weak immune system was barely functioning. At 5 months and weighing only 6 pounds, Molly was hospitalized for strep throat, which is unheard of in babies under the age of 2. At 6 months old, doctors sliced a hole in Molly's stomach for a feeding tube. Each night Jack and Lisa watched Molly's tiny chest rise and fall, praying she would wake the next morning.