Emmy's Story...

Emmy was diagnosed with Sickle Cell Anemia shortly after her birth January 4, 2010.   We didn’t have the privilege of meeting our precious daughter until she was 3 weeks old.   She is absolutely beautiful, and this child is full of life and personality.

Only 2 short weeks after bringing our sweet baby home, Emmy was admitted to the hospital for her first of many high fevers.  With Sickle Cell, fever is a medical emergency; it can be the first symptom of a dangerous life-threatening bacterial infection. 

Emmy has been admitted to the hospital over 14 times in her short little life.  She has had over 20 trips to the emergency room and is no stranger to being poked and prodded. Sickle Cell Anemia causes chronic pain, many children suffering from this disease will experience times throughout their lives that they will be unable to walk due to the severity of the pain.  At only 9 months old, Emmy began experiencing pain in her tibia.  This pain made it difficult for Emmy to crawl, learn to walk, or even play in her exersaucer or jumperoo.  We were given a glimpse of what this disease can do to every person it effects.

As Emmy has gotten older, her fevers have become more frequent, allowing her team of doctors to believe that she may have a secondary disease.   I am pretty sure that Emmy has had almost every medical test available, she has been poked, examined by specialist after specialist, she has had x-rays, an echo of the heart, MRI’s, CT scans, etc.  She has been through it all, or at least to her momma, it feels that way.

In February of 2011, Emmy woke up on a Thursday morning with a temperature of 105 degrees, and was suddenly unable to stay balanced; she couldn’t take one step without falling over.  We rushed Emmy to the ER, fearing that she may have had a stroke (very common in sickle cell patients).   Emmy had her first MRI, which came back with abnormalities.  Her MRI showed damage to the white matter.  We are still unsure of what the MRI means, but we are in the process of running many tests for other possible diseases such as mitochondrial and/or degenerative diseases.

In our many trips to the hospital, we have learned how uncomfortable it can be.  It’s definitely not home.  We began to brainstorm ways that we could allow Emmy to show off her personality, and to make each visit feel more like home.  We immediately thought about having our own hospital gowns made, gowns that would be stylish, yet functional.  Gowns that would match her big bows she is known for within the walls of Scottish Rite Children’s Hospital. 

As we began to seek out someone to make these gowns for Emmy, we realized that there is a real need for all children in and out of the hospital to have this same luxury.  We began to think on a larger scale, and so “Emmy’s Got Style” was born. 

Emmy’s Got Style is dedicated to improving the lives of chronically ill children. We know first-hand how hard it is to be in the hospital often and for extended periods of time. We designed these gowns to be stylish and functional, allowing children to show off their personalities even when they aren’t feeling their best.