Sydni’s Story

Site created on April 3, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  
At the age of 6, Sydni had her first hospital stay with no explanation as to the cause.  For the next 9 years, she had episodes of unexplained illnesses increasing in severity and length of hospital stays.  In 2017 migraines prompted the doctors to do an MRI on her brain and spine.Sydni was officially diagnosed with Familial Hemophagocytic Lymphohistiocytosis ( Familial HLH) in March 2018.  Familial HLH is a rare disorder of the immune system.   It is a disorder of widespread accumulation of lymphocytes and mature macrophages, sometimes with hemophagocytosis, primarily involving the spleen, lymph nodes, bone marrow, liver, and cerebral spinal fluid. According to a large population-based study published in Sweden, it was estimated to occur in 1.2 cases per million.   Yes, my baby girl is one in a million.

Newest Update

Journal entry by Sydni Lee

Syd and I have the honor of speaking at the Ronald McDonald House party 2019.  Attached is a link to a nice article that the Arizona Daily Star in Tucson did about her journey and the event.

https://tucson.com/news/local/ronald-mcdonald-house-will-host-fifth-annual-house-party-benefit/article_79ae1252-a31d-5193-a058-90b92570d4fc.html?utm_medium=social&utm_source=email&utm_campaign=user-share
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