No Way is She Letting Sickle Cell Slow Her Down
To help Speak Now for Kids recognize Sickle Cell Awareness Month, we have Dayton, Ohio’s own Awo.
We met Awo when she represented Dayton Children’s Hospital at the 2014 Speak Now for Kids. As a child living with a complex medical issue, Awo is one of the estimated 3 million children who could ultimately benefit from the Advancing Care for Exceptional Kids Act (ACE Kids Act).
For the first seven years of her life, Awo stayed fairly healthy. However, when she was in the second grade, her condition worsened; on a number of occasions Awo had to stay for a week at Dayton Children’s Hospital due to acute chest syndrome—a serious complication related to sickle cell.
Hi! My name is Awo and I have sickle cell disease. I have had it my whole life because it’s a genetic disorder that affects the red blood cells. Two years ago I was in Washington, D.C. with other kids with chronic medical problems and the Children's Hospital Association/Speak Now for Kids. We spoke to our senators and representatives about how vital it is for kids to have health care and for children's hospitals to have proper funding—it was a great experience! I am now 16 years old and a junior in high school.
My disease was more severe in the earlier years of my life, but with help and support from my family and my hematologist, Dr. Dole, I can say that I am now a teenager who happens to have sickle cell! About three years ago I started taking a medication called hydroxyurea, and it has really changed my life. I haven’t had a serious sickle cell attack for a long time, I very rarely have to be admitted to the hospital, and even when I am sick it does not last long. Because of the medicine, I have been able to live a normal life, pain free! I can play sports and hang out with friends without worrying about getting sick. I take hydroxyurea along with my other prescribed medications every day to make sure I stay healthy.
My focus is now on getting good grades and then starting college! I hope that the rest of my life will be pain free!
You can see Awo’s original Family Advocacy Day bio here.