EDGEWOOD — Forget about the same old flowers and candy for Valentine's Day. Light a candle and hug a child instead.

        I'm making this suggestion on behalf of Anne Rugari of Edgewood, who has a story to tell. It's about hope — hope for her own family, but also for everyone else's.

        The Rugaris have been especially blessed this year, so Mrs. Rugari is on a mission. She wants to spread awareness of the disease that affects her daughter. It's called Krabbe, (pronounced “Crab-AY”), and until recently, it almost always killed children before they turned three.
       

Foundation formed

        Feb. 14 is “Hunter's Day of Hope for Children,” in honor of the 4-year-old son of Jim Kelly, the former Buffalo Bills quarterback. Hunter Kelly has Krabbe, and his parents formed Hunter's Hope Foundation to raise money for research.

        Today, the foundation is asking people to light a candle and pray for the health and happiness of children.

        Families like the Rugaris already are benefiting from attention to the disease. Over the last few years, a procedure called an umbilical-cord blood transplant appears to be saving some babies. So far, it's working for the Rugaris' 1-year-old daughter, Gina.

        Mrs. Rugari and her husband, Phil, are carriers of the genetic mutation that causes Krabbe. Children with the disease lack an enzyme that forms myelin, which protects nerve cells. As a result, the children lose mental and motor functions, become deaf and blind and eventually die.

        The Rugaris have a son, Philip, who is a standout swimmer at Covington Catholic High School. Another son, Nick, died of Krabbe in 1987. He lived one year and three days.
       

Few have disease

        The Rugaris didn't know they were carriers until Nick was born. At the time, he was one of only 10 children with the diagnosis, Mrs. Rugari says.

        Earlier cases may have been misdiagnosed as failure-to-thrive or cerebral palsy. It's now estimated 2,000 children worldwide have Krabbe, Mrs. Rugari says.

        In 1999, she got a big surprise: At 42, she was pregnant again.

        She and her husband prayed the baby would be healthy, but Gina was diagnosed two weeks after her birth. The next week, the family was on its way to Duke University, where the transplants are performed.

        Gina had nine days of chemotherapy to wipe out her immune system, so her body would except new blood from the umbilical cords of children who are born healthy.

        One year later, the transplant appears to have stopped any neurological deterioration.

        It's unfair, people have said, that the Rugaris faced this disease twice.

        Mrs. Rugari disagrees. “What if (Gina) was given to someone who wasn't able to do for her what we were able to do?”

        Because of Nick, the couple caught Gina's illness quickly, which is essential to successful treatment.

        “My son Nick, who died of Krabbe, has given me Gina,” Mrs. Rugari says.

        Now she wants to share that gift by spreading awareness.

        “I don't want other parents to suffer the loss of a child to this disease,” she says.

        She'll be lighting her candle today. Let's join her in wishing good health to children everywhere.
       For more information on Krabbe, contact Hunter's Hope Foundation at (877) 984-4673.
       

       Karen Samples can be reached at (859) 578-5584 or ksamples@enquirer.com.

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