My name is Taniah and I’m 8 years old but I’m one month away from being 9. I’m a 3rd grader who loves to have play-dates with my friends. We like to sing and dance together and make music videos.
Since I was a 6 weeks old, I have been coming to Lurie Children’s for sickle cell disease. Sickle cell disease is a blood disease. Instead of my blood cells being shaped like bubbles that flow easily in my veins, my blood cells can get sticky and dried out and shaped like raisins! It’s harmful to me because when my blood cells get like this it causes me to have pain and makes my organs stop working like they should.
I am so blessed to have such a great team of doctors and nurses at Lurie Children’s. They always tell me how big I am getting and tell stories about how hard it was for them to take my blood when I was a little and how good I am at it now! Over the years, they have taken such good care of me and helped me find medicine to make my disease not be as bad.
In June, I was invited to go to Washington D.C. to represent my hospital in Congress and the Senate! My mom and dad came along with me. I felt so privileged traveling to Washington D.C. representing Lurie Children’s and meeting kids just like me who are the voice of their hospitals. We asked Congress and Senate to help support some new laws that would help kids like me get better healthcare for their complex medical situations. I think it’s important to advocate for kids because if we don’t than no one else will. Some kids aren’t able to get the kind of special care that they need because they can’t afford it, and they don’t live near such a great hospital like me.
I don’t let sickle cell hold me back or make me sad. I know that God has made me this way on purpose and He has a good plan for my life. He wants me to use my disease to help other people and to share about how good He is even in the midst of my pain. He’s not finished with me yet!
Taniah represented Lurie Children’s on Captiol Hill as part of Children’s Hospital Association’s initiative Speak Now For Kids (#SpeakNowForKids). She participated in Speak Now for Kids Family Advocacy Day to advocate for children’s health and urge members of Congress to pass the ACE Kids Act, a proposal to improve how care is delivered to children with complex medical conditions on Medicaid.
You can help too and advocate for kids like Taniah. Contact your legislators and #SpeakNowforKids. Visit http://www.congressweb.com/speaknowforkids/12.