• Family steels for another fight

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    FAMILY LIFE: Tony Ciavarella with children Ellie and Charlie.

    TODDLER Charlie Ciavarella stole the hearts of locals last year as he sought treatment for a rare genetic immune condition.

    Now his family is preparing to battle the same illness in his baby sister.

    Like her big brother, who underwent a bone marrow transplant as an 18 month old in July last year, four month old Ellie Ciavarella was born with STAT1 loss of function mutation.

    But while it took about a year after Charlie’s symptoms manifested to find out what was making him sick, parents Tony and Merryn Ciavarella discovered before Ellie’s birth that she had the same problem gene, and would also need a bone marrow transplant.

    The search for a donor began before Ellie arrived, but an international search of the bone marrow registry and cord blood bank could not find a good match.

    So, though parents can only expect to be about half a match for their children, Tony is Ellie’s best chance of survival, and has been undergoing preparation to ensure he is ready to be her donor.

    “It’s our only option, as there is no other match,” Merryn said.

     

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