50 NOVEMBER 2017 ARCAD A NEWS By Elaina Verhoff When Krystie Karl-Steiger was born in January 2006, she was a happy, healthy baby girl. It wasn’t until she was 5 or 6 months old that her parents Rick Karl and Bruce Steiger suspected that her development might be delayed. A trip to a Gymboree class with Krystie confirmed their fears. “The instructor came over and said something was wrong,” Karl said. “She told us we needed to see a doctor.” Karl and Steiger took K r yst ie t o he r pediat r ician who assured them not to worry about her delayed development. But the two could see that things continued to get worse. “We noticed weird things,” Karl said. “She had a startle reaction to loud noises. We weren’t quite sure she was focusing very well. So, we took her to the best of the best in California – UCLA and USC. A couple places and a whole bunch of medical tests later, we got the wrong diagnosis.” It wasn’t until Krystie’s parents took her to the eye doctor that they found out her true diagnosis. Krystie had Tay-Sachs disease, a hereditary disease caused by a gene mutation. The ophthalmologist spotted an eye abnormality called a cherry-red spot, an indicator of Tay-Sachs. “He looked at us and said ‘I’m so very sorry,’” Karl said. Karl and Steiger had used an egg donor and surrogate, and later found out that the egg donor was a Tay-Sachs carrier, as was Karl, Krystie’s biological father. The new dads were told that their daughter would probably live to age three. “Being the fighters we are, we said that is crazy,” Karl said. “There has to be more out there. We went to the head of neurology at USC who said ‘this is not about your daughter any more. Make her comfortable. It is certain she will die. This is now about you.’” Karl and Steiger, not content to watch their daughter die without doing everything possible to help her, went to a conference on Tay-Sachs and made the decision to put Krystie through a cord blood cell transplant, knowing that it would be an extremely difficult and risky procedure, but wanting to give her every chance at a longer, fuller life. Karl said they didn’t know how tough it would be because words simply don’t describe these things, but ultimately her quality of life was enhanced. “She was a smiley, happy little girl who traveled around the country with us,” Karl said. And it was through her expressions that Krystie was able to communicate during her time on earth, before she passed away in 2015 at age nine. “Krystie never said a word in her life,” Karl said. “She could make sounds and you had to know how to read her eyes. She would tell you what she needed and what she was thinking, but only through her expressions.” In 2007, when Krystie was one year old, Karl became one of the founding members of the Cure Tay-Sachs Foundation. In January 2017, he took it over and left his corporate IT position to become executive director of the foundation, which he runs from his home in the Biltmore, near 24th and Camelback. His goal is to raise awareness of Tay-Sachs disease and to provide funding into research to find a cure for the disease. “Awareness is incredibly important,” Karl said. “I want people in high risk groups to get tested. Jewish, Cajun Americans, Irish Americans, Eastern Europeans, German Americans. They are by far the biggest groups now. I was recently told by a rabbi that Millennials think they are immune, but they need to get tested.” Since the foundation was established, the group, mainly funded by families of individuals with Tay-Sachs, have made eight grants totaling $2.7 million, much of that focused on gene therapy. “We expect that there will be clinical trials on humans in Canada next year, and maybe late in the year in the U.S. with some of the things we’ve funded,” Karl said. These treatments are extremely expensive, says Karl, costing in the neighborhood of $1.6 million for medicine for three children. Karl says social media has played a key role in raising awareness and funds for Tay-Sachs disease. He encourages people to visit the foundation website at http://www.curetay- sachs.org. The foundation address is 2409 E. Luke, Phoenix, 85016. The dedicated father, who once blamed himself for his daughter’s disease, says he has come to the realization now that there is nothing he would have done differently. “We made Krystie’s life as good as it can be,” Karl said. “I don’t blame myself any more. I run this charity now and that is my way of paying tribute to her. 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