One of our patients, 11-year-old Tymia McCullough, traveled to Washington this summer to talk with political leaders, as they debated the Better Care Reconciliation Act to repeal the Affordable Care Act. Tymia lives in Georgetown but receives treatment for sickle cell anemia, a genetic blood disorder that causes crippling pain, at the MUSC Children’s Hospital. Now that she’s had some time to reflect, we wanted to hear about her remarkable trip.
1. Tell me a little bit about your experience on Capitol Hill.
I was able to meet with the entire South Carolina delegation and speak about the importance of Medicaid while also exploring some beautiful places, like the Smithsonian National History Museum. This was amazing.
a. What were you expecting?
I was praying to be heard and understood by the congressmen and senators on how important Medicaid is -- not only to me and children like me with medical complexities -- but for all children.
b. How did you prepare?
I studied about Medicaid. My mom and dad told me some very important information about the BCRA bill and what it would do, and I watched the news to make sure I stayed up with what was going on.
c. What did you enjoy most?
Seeing all of the congressmen and senators, being able to go into the Capitol building and being invited to go on the House floor to cast a vote with all of the representatives.
d. What surprised you?
When I got home and found out that the BCRA bill had been defeated, it showed me that they were listening to me, and my words did have power when I was speaking from my heart.
2. You’re also an American Red Cross ambassador and National American Miss South Carolina Pre-teen. How did you become so involved in advocacy work and outreach?
When I got involved with the National American Miss pageant in 2015 and won, it gave me more strength and confidence. Having sickle cell anemia type SS and being able to compete with all the other girls showed me that I wanted to reveal to children with medical complexities and all children that your sky has no limit; you can be or do anything. I knew that I wanted to get involved with advocacy, educating and outreach for what was special to me.
3. We know that you spend a lot of time at MUSC, often when you’re in a lot of pain. What makes your experience here a good one?
Being able to watch the new San Diego Zoo Kids channel, having my favorite nurses and doctors take care of me to help me with my unbearable pain and being able to do arts and crafts in the Atrium.
4. Do you already have an idea of what you’d like to do when you grow up?
Yes, I would like to be a pediatrician when I grow up.
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