Our legislators in Washington D.C. need a voice to tell them about things that matter to kids! This year kids from Dayton will be represented by Awo Onwudiwe as part of the Children’s Hospital Association’s Family Advocacy Day. Awo and her mother will join nearly 30 other child patients and their families traveling to the nation’s capital to help bring to life the importance of adequate funding for pediatric care June 24-25, 2014. The event includes one-on-one congressional visits, a congressional luncheon, a tour of Washington and a celebratory dinner to honor the child patients known as Family Advocacy Day “All Stars.”
Awo is a true all star! Her smile can light up a room. Whether she is acting, singing or playing volleyball, this active pre-teen has a bubbly personality and fun loving attitude that rubs off on everyone she comes into contact with. She has learned to overcome her sickle cell disease with a positive attitude and alongside her mom is helping to pave the way for better treatment for adult sickle cell patients.
Sickle cell disease is an inherited disorder in which red blood cells (which are normally round and flexible), are sticky, hard and shaped like crescent moons. This condition can cause serious pain episodes.
For the first seven years of her life, Awo stayed fairly healthy. However, when she was in second grade, her condition worsened and Awo ended up having to stay for a week at Dayton Children’s on a number of occasions due to acute chest syndrome, a serious complication related to sickle cell. Not long after, she began experiencing intense knee pain and eventually required a blood transfusion.
By the time Awo was 9 she began taking ownership of her own treatment and learned how to cope with her disease. Awo has learned what medicines she needs to take every day and when she does have pain has learned what she needs to do in order to feel better.
Awo is teaching others that the disease doesn’t control you; you control the disease as she continues to do amazing things!
Follow this blog for updates from Awo and her mom!