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Science & Medicine

Genetic ties endure

Krystie Anna Karl-Steiger takes a break from play with her parents. The daughter of Rick Karl and Bruce Steiger, 15 months old in this photo, was conceived with a donor egg and a surrogate mother. The day before her first birthday, she was diagnosed with Tay-Sachs, a neurological disease that usually kills its victims before age 5. Both the woman who provided the egg and Krystie’s biological father carry genetic mutation, and neither knew it. A simple blood test would have revealed the mutation. Many recipients and donors contact broker agencies with the assumption that screening and testing will be as thorough as the field of genetic science allows. That is not the case.

Krystie Anna Karl-Steiger takes a break from play with her parents. The daughter of Rick Karl and Bruce Steiger, 15 months old in this photo, was conceived with a donor egg and a surrogate mother. The day before her first birthday, she was diagnosed with Tay-Sachs, a neurological disease that usually kills its victims before age 5. Both the woman who provided the egg and Krystie’s biological father carry genetic mutation, and neither knew it. A simple blood test would have revealed the mutation. Many recipients and donors contact broker agencies with the assumption that screening and testing will be as thorough as the field of genetic science allows. That is not the case.  (Allen J. Schaben / Los Angeles Times)

Eggs

Bruce Steiger plays with his daughter, Krystie. At 10 months, her physical development stopped, and at 15 months, she could not walk.  (Allen J. Schaben / Los Angeles Times)

Eggs

Rick Karl, left, and Bruce Steiger play with their daughter, Krystie. When Karl and Steiger decided to have a child, they hired a surrogate mother and used a donor egg. Krystie was born with Tay-Sachs.  (Allen J. Schaben / Los Angeles Times)

Hospital

Krystie is being treated for Tay-Sachs at the University of Minnesota Children’s Hospital √in Fairview, Minn. With her are her father Bruce Steiger and her grandmother, Jeanne Karl.  (Carlos Gonzalez / For The Times)

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Bruce Steiger

Bruce Steiger holds Krystie in her hospital room in Minnesota, Krystie is receiving treatment aimed at prolonging her life. She received food and medications through a tube.  (Carlos Gonzalez / For The Times)

Krystie

Krystie’s parents keep a blog, detailing Krystie’s hemoglobin levels, her steroid regimen, her vomiting and pain, her crankiness and tears.  (Carlos Gonzalez / For The Times)

Krystie

Krystie and her parents, Rick Karl, left, and Bruce Steiger, are staying at Ronald McDonald House in Minneapolis while she is treated for Tay-Sachs.  (Carlos Gonzalez / For The Times)

Daily walks

Rick Karl, left, and Bruce Steiger, 41, take Krystie on a walk, a daily activity for the family. Karl and Steiger have helped launch the Cure Tay-Sachs Foundation to raise money for research.  (Carlos Gonzalez / For The Times)

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Karl's hand

Clutching a stuffed kangaroo, a gift from Child-Family Life Services at the University of Minnesota Children’s Hospital, undergoes treatment for Tay-Sachs.  (Carlos Gonzalez / For The Times)

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