Wednesday, July 01, 2009

Novel Approach Taken with Colorado Girl's Rare Disease by Kim Christiansen

Your child is dying. She has a genetic disease. She needs a bone-marrow transplant to save her life. You want more children. You can't take the risk of having any more children the natural way, so you consider your options.

So begins the story of one Colorado family, Jack and Lisa Nash and their daughter Molly.

Almost nine years ago, their story made headlines around the world and led to stories in Newsweek and BBC News. Their story became a seed for a book by author Jodi Picoult.

A film adaptation of her novel "My Sister's Keeper" comes to theaters this weekend. The story is fiction and offers a far different outcome than what happened for the Nashes. Still, the Nash family is growing accustomed to the attention.

"We did something so new and so cutting edge that it's always going to be this way forever, and as the kids get older, they're going to have to learn how to deal with it," Lisa Nash said.

When Molly was very young, she was diagnosed with Fanconi anemia. Her parents were told she likely would not live beyond age 7. For a time, the Nashes made the decision to postpone expanding their family for fear they would have another child with the same disease.

They turned to in-vitro fertilization and preimplantation genetic diagnosis. This procedure involves testing one cell of each days-old embryo, screening for Fanconi anemia and then finding the best bone marrow match for Molly.

"Everything was a miracle," said Dr. William Schoolcraft with the Colorado Center for Reproductive Medicine.

"After four failed cycles, to have just one embryo that we could transfer and have that embryo implant, with 100 percent success, have the pregnancy go full term and have the stem-cell transplant in Minnesota . . . for Molly to survive and thrive, it's a fairy tale ending, it really is."

The cord blood cells from Molly's brother, Adam, gave Molly new life. The cord blood is what remains in the placenta and umbilical cord after birth and is rich with adult blood stem cells. In a successful transplant, those cells take root and produce blood cells and bone marrow.

"Nobody ever touched Adam. We recycled Adam's cord blood, and his cord blood that he no longer needed saved Molly's life," Lisa said.

The Nash story raised many ethical questions and led to fierce debate about genetic screening and concerns about so-called designer babies.

"I think people have looked at this technology and said, Will there be a slippery slope? Will people take this and use it to pick eye color or intelligence? The reality is we are using this just to rule out lethal diseases, so we're only testing for diseases that would be fatal to an offspring, and I think in that context it's very appropriate," Schoolcraft said.

Today, Molly is 14, Adam is 9 and their younger sister, Delaine (also conceived through in-vitro), is 6.

Molly is not disease-free; she is diabetic, deaf in one ear and has thyroid issues. "I'm happy that I'm alive," Molly said.

At some point, Lisa said, she expects she'll see "My Sister's Keeper." She views it as just entertainment, because the real story is their story, and it has a happy ending.

Lisa says she'll never forget what her grandmother told her when Molly was very young: Molly has a purpose. Lisa considers her grandmother a wise woman, and added, "Look at what Molly's taught the world, one little girl, look at what Molly's taught the world."

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