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 countless times in her short little life.  She has had over 30 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/jumperoo.  Emmy now experiences pain in both eyes, as well severe migraines.

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, ultrasounds, 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 and are seeing a specialist for a mitochondrial disease work up.

Before adopting Emmy, we knew nothing about sickle cell anemia.  We got our first lessons really quick.  What we had been told was that sickle cell was either really bad or very mild, and there wasn’t a whole lot in between.

Emmy is so brave, with as many visits as we have had, and as bad as her little veins are, she should be terrified of CHOA and AFLAC, but she’s not.  She walks around both the clinic and on the floor like she owns the place. 

Emmy has become quite famous for her horrible veins, the IV team knows her very well.  It usually takes a minimum of 4 tries before anyone is successful in placing her IV, and through it all, my sweet Emmy is such a trooper.  She smiles through her crocodile tears every time.  I am amazed at how strong my sweet girl is. 

We are currently in the process of testing Emmy for mito disease.  Emmy has many issues that we believe may be related to a secondary disease such as mitochondrial disease. 

Emmy is currently seen in Aflac once a month to monitor her labs as well as her medications.  She is takes 7 different medications daily, and they don’t phase her one bit.  She is one tough girl.

We had no idea when adopting Emmy that through her illness CHOA and Aflac would become family.

We are so thankful for CHOA and for AFLAC.  I cannot imagine walking through all of this without their knowledge and care.  They truly have become family.  They treat the whole family, not just the patient.  So thankful for each and every person that tries to make each visit a happy one for Emmy.  They go above and beyond what it necessary to make her experience as comfortable as possible.