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Ukiah woman turns grief over losing son into effort to protect kids from disease

Clare Hoang, 31, smiles as she and her 3-year-old son Gryphon lead his Ukiah-area preschool class in singing "Do You Know the Colors of the Rainbow."

But the smile cannot hide the sadness in her face.

Gryphon's identical twin brother, Phoenix, died last month from a rare and virulent disease, meningococcemia, which infects the bloodstream and attacks organs. It is caused by the same group of bacteria that can cause meningitis, which affects the brain and spinal column.

Phoenix Hoang


The bacterial infection struck swiftly, stopping his heart about 12 hours after the onset of flu-like symptoms, she said. He was revived but then taken off life support two days later when tests showed he was brain dead.

At times, "I feel like I'm going to cry my heart through my mouth," Hoang said.

She's emerged from the depths of grief to tell her story in hopes it will save other children.

Hoang has begun campaigning to vaccinate young children for infections caused by a group of bacteria called Neisseria meningitidis, the type that killed her son.

"No child should die from something that is preventable," she said.

Hoang plans to speak before a federal panel of experts responsible for establishing vaccination routines -- the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices -- in June.

She joins the debate over the benefits and pitfalls of trying to vaccinate against meningococcal disease.

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