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Emma, age 4

“This is Emma.  She’s 4 years old and is living with primary lymphedema of her lower extremities from her toes to her belly.  At 7 months old we knew there was a problem when she woke up one morning with a swollen foot.  She was finally diagnosed at 1 and 1/2 years old.  As a care giver of a child with lymphedema I see first hand the daily struggles that occur.  In her 4 short years on this Earth, Emma has so far been hospitalized twice for infections.  The first time was an aggressive lymphangitis infection that started in her foot that resulted in a 3 day hospital stay, and this past September another aggressive infection complicated by a strep B blood infection for which we stayed in the hospital for 6 days and had an at home IV PICC line for 10 days following her release.  Some days I cry, sob really.  It is so frustrating to have a child with a disease that most doctors know nothing about, but through all of this, somehow Emma’s energetic spirit for life and laughter remains untouched.  She can teach us all so much about the real strength of the human spirit.

I have never met a happier, sillier little being.  Emma LOVES to dance!  She’s constantly dressing up and singing and dancing around our house and attends dance class every Tuesday.  At the end of the year her dance school puts on a terrific recital at a fancy theater near our home which Emma refers to as ‘Hollywood’!  She loves playing with her big brother, Jacob and her cousins too.  She’s attending pre-K this year and gets to ride the ‘big bus’.   No matter how she is feeling on a given day she begs to go to school.  I can only hope that state of mind continues through her high school years!  Her resilience is admirable and keeps all of us around her strong.  She loves animals, especially her cat Finnigan.  Her precious face is one of the many faces of lymphedema.  In Emma’s words ‘I’m going to be ok mommy’ and the rest of you who suffer from lymphedema will be too!”

November 2012

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