Norway family fights for daughter with rare condition


    Alivia was diagnosed with Primary HLH, a rare genetic condition, in December.

    An eastern Iowa family is raising awareness after their baby's scary diagnosis.

    Alivia Colin is only 8 months old, but already facing the toughest battle of her life. What appeared to be a virus back in October has now been revealed as a rare, incurable disease called Primary HLH.

    It started with a sign that many parents may have written off.

    "Alivia kept on getting a fever," her mother Cassandra Colin says.

    A doctor in Cedar Rapids said it was likely a UTI and sent the family home. More time went by with baby Livy not getting better, and with Cassandra's worry kicking in.

    Eventually the family ended up at the University of Iowa Stead Family Children's Hospital, where they found out what was causing Livy's temperature to rise and lethargy to take over her spunky personality.

    "On December 5th it was a complete shock," Cassandra says of the diagnosis. "It was a complete surprise to us that she was diagnosed with HLH."

    A cell inside little Alivia's bone marrow is tricking her body into fighting an infection that doesn't exist. Primary HLH is a rare but aggressive genetic syndrome. Cassandra says it doesn't usually get diagnosed and they were lucky to catch it so quickly.

    Now Cassandra and her youngest have to pack up and move from their tiny town of Norway, Iowa, so Alivia can get treatment from specialists in Cincinnati. Her father, Oliver, will stay behind to take care of the couples' first grader.

    "Just working when I can and when the times get hard in Ohio, just be there for her," Oliver says.

    Alivia will also get help from someone she's never met -- a bone marrow transplant is what will save her life.

    "Whoever it is that is going to donate her bone marrow, we already want to express the gratitude to them," Cassandra says. "Just because they are saving our daughter."

    As these young parents prepare to part for what could be nearly a year, they're thankful for people, even strangers, who give of themselves, and for the power of Cassandra's maternal instinct.

    "They don't have voices, you're their advocate," Cassandra says, pulling Alivia close to her. "Just push yourself to ask for more if you just feel like something's not right."


    The family has a GoFundMe to help pay for moving and medical expenses, and Cassandra is updating everyone on their journey on her blog.

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