Emmy was born on January 4, 2010 with sickle cell disease. We met Emmy for the first time on January 27th, when we officially adopted our precious daughter. We knew when we decided to adopt Emmy she had tested positive on the newborn screening for sickle cell disease, along with several other genetic markers. We had no idea what we were getting into, we knew nothing about sickle cell disease, and we had a lot to learn. At 5 weeks old, only 2 short weeks after we met our daughter, Emmy was admitted to the Aflac Cancer Center at Children’s at Scottish Rite for fever. Little did we know that admission would be the first of many, many admissions over the next 5 + years. With sickle cell disease, fever can be a sign of a life threatening bacterial infection, while most times it isn't; precautions have to be taken to be certain that it is not. Most of our admissions have been just that, days at time in the hospital making sure that she doesn't have infection. She has also had numerous times where her spleen has swelled, indicating that she may be going into a spleen sequestration, which is common in sickle cell patients. A splenic sequestration can be life threatening. Due to the number of splenic sequestrations Emmy has had, she had her spleen removed last July.

Sickle cell has rocked our world. In March of 2013, Emmy experienced a life threatening bout of acute chest syndrome. She was hospitalized for over 3 weeks, 2 weeks of which was spent in the PICU. It was terrifying to watch your child become so sick, so fast and be helpless to fix her. During that time, Emmy had a bacterial infection, consistent pain, acute chest syndrome, splenic sequestrations and more. It is by far the scariest admission to date - and proved to us how scary Sickle Cell can be. Emmy literally went from playing one minute to the PICU the next…she changed on a dime. After that admission, Emmy began chronic blood transfusions over the next 7 months. The blood transfusions gave Emmy’s body a little break and allowed her lungs to heal completely from the acute chest. We had never been so thankful for blood. We are so grateful for every person who gives blood– our sweet Emmy is a constant recipient and we are so thankful.

Emmy has also experienced pain crises, another common symptom of Sickle Cell Anemia. It most often affects Emmy's legs, eyes and head, and makes it hard for her to see, walk and play. It is disheartening to watch your child suffer from both chronic and acute pain and not be able to offer her relief. We try to offer relief at home with distraction, narcotics, heating pads, etc….if that doesn’t work we head to the hospital for stronger meds and fluids. Emmy often has pain crises in extreme weather changes, after swimming, and traveling. Unfortunately, swimming is one of her favorite things to do. Last year she was hospitalized for over 10 days due to a pain crisis in all of her extremities after swimming. It was one of her worst pain crises to date. Heartbreaking to know one of her favorite things causes her so much pain.

Emmy is so brave. One of the strongest and bravest 5 year olds I know.. She has been poked and prodded a lot over the last 5 years. Her little veins have not been cooperative, so in July 2013, Emmy had a port placed in her chest. As her mommy, it was so difficult to watch her go through these experiences, see her in pain, see her "sick eyes" when her fever has spiked again, and writhe in discomfort every time an IV was attempted. We are so grateful for the port and the ability to have IV access with one poke.

I wish we could fix it and make it all go away for her, wish she didn’t have sickle cell….but,I am so grateful for CHOA and AFLAC and who they have become to our family. They are our second home. They are our second family, and I cannot imagine walking this terrifying road without them. We are so grateful to have this amazing hospital in our own backyard.