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

This is Geri, Syd's mom. It has been another 6 months since we have given an update.  I have thoroughly enjoyed watching Sydni be able to dive into her senior year and experience some sort of "normal" life again.  "Normal" for us is still 2 to 3 appointments per week,  However we are very blessed that the majority of them are local now. And her appointments with her specialist do not have to be in Tucson now. He is seeing patients in Phoenix once a month now and that has simplified our life tremendously. Syd is very active in clubs,  theater, Community service, youth groups and she works at Dairy Queen and as a make up artist at Above and Beyond Aesthetics.   She enjoys, as well as I do, spending a lot of time with her big sister Heather. We 3 are the best of friends. We are extremely grateful for our friends and family who have consistently given us love and support beyond what we ever could have asked. We were able to spend Thanksgiving with our beloved Lee/Corona family in Tucson. They are the best and we are consistently surrounded by their love and support.  We were also extremely blessed to spend Christmas at Heather and her husband's home. They did a fabulous job hosting and we  made awesome memories. Recently I have had a love /hate relationship with steroids. Steroids saved my daughter's life to get her to the point of transplant and we are forever grateful.  On the other hand they have caused some  side effects. To make a long story short,  She has chronic pain  in her joints specifically her ankles at the moment. It continually got worse  to the point of a severe limp and after several tests they determined there is a possibility they can fix it so she does not have chronic pain the rest of her life. The steroids made her bones do some weird things. The poor kid had to have surgery last week on her right foot And she will have surgery on her left foot in a month or 2. But true to Syds nature and personality she never complains.  As a matter of fact she insisted on going through with a lip sync contest she had been practicing for a for a couple weeks the day after her  surgery. Against my motherly advice I allowed her to go . Would you believe that stinker got 2nd place and $200!!!!! She performed in a wheel chair and was just a doll with a ton of personality and humor.  Even after missing a year of school Syd will be graduating on time, with many college credits, 9th in her class with a 3.9 unweighted gpa.  She has accepted an offer at Northern Arizona University to major in Speech Pathology where she believes her passion to help others and empower them with communication will allow her to use her strengths of compassion ,listening and patience.  She is currently working very hard on scholarship applications and the letters of recommendation she has received bring me to tears. Again ,we thankeveryone for the love, support and encouragement in this extremely long journey.  I know God has a great plan and purpose for Syd.  I am blessed to know her as a person, let alone be her mother. Xoxo
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