Local Infant Fighting Rare Disorder Affecting Her Bone Marrow | NBC 7 San Diego

Local Infant Fighting Rare Disorder Affecting Her Bone Marrow

Around 100 people have been diagnosed with her disorder, CAMT

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    NEWSLETTERS

    The baby girl of a La Mesa couple was born with a rare blood disorder. NBC 7’s Elena Gomez has more on how the infant's 2-year-old sister helped save her life. 

    (Published Wednesday, May 17, 2017)

    What started as a normal, one-month check-up at the pediatrician’s office turned into a visit to the emergency room for a La Mesa family.

    Olivia Diez said she told her pediatrician about small red dots on her 9-month-old daughter's skin.

    The doctor assured her the dots on Zoe’s skin were most likely nothing, but she would run a blood test.

    At midnight, the family got a call that Zoe’s platelets were incredibly low. Hers were at 8,000 – the normal is 150,000.

    “They called us and said you need to go to the emergency room. No parent wants to hear that, let alone at midnight,” said Jim Diez, Zoe’s dad.

    It took 8 months of working and pushing doctors to figure out why Zoe's platelets were so low.

    Finally, she was diagnosed with Congenital Amegakaryocytic Thrombocytopenia or CAMT--a disorder in which her bone marrow is not producing enough platelets.

    It's so rare that only around 100 people are diagnosed with it in the world, the family told NBC 7.

    “It’s overwhelming. There are no words to say how scary it is when you find there is something wrong with your baby. Perfectly healthy baby, perfectly healthy pregnancy, perfectly normal delivery – everything was normal and then there is this very bizarre, fluke thing,” said Olivia.

    On Wednesday, Zoe was on her second day of chemotherapy. In about a week, the family said she will be getting the bone marrow transplant she needs.

    The family told NBC 7, they did not have to look far for a donor--Zoe's 2-year-old sister Eliza was a perfect match.

    “I feel like she does know that she is doing this for her sister. I think she knows that. I feel like she knows that she has to be brave,” said Jim.

    Zoe will get her bone marrow transplant on May 25 at Rady Children's Hospital.

    While she recovers, the family said the two sisters will be separated for weeks. 

    Olivia told NBC 7, that every mom should listen to their maternal instincts.

    “I encourage any mom out there who thinks something isn’t right or doesn’t feel like they are getting the answers they need from their health care provider – keep asking, go up the ranks, it’s important, nothing is more important than your children’s health,” she said.

    If you would like to donate to the Diez family, click here.

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