Audio: Her Own Medical Future At Stake, A Child Storms Capitol Hill
Alison Kodjak / NPR
Tymia McCullough is a poised, pageant-winning 11-year-old from South Carolina. She also happens to have sickle cell anemia and relies on Medicaid to pay for medical care. (Liam James Doyle/NPR)

Tymia McCullough is a poised, pageant-winning 11-year-old from South Carolina. She also happens to have sickle cell anemia and relies on Medicaid to pay for medical care. (Liam James Doyle/NPR)

Tymia and her mother, Susie Pitts, head to the U.S. Capitol last week to lobby South Carolina lawmakers on health care, particularly the importance of Medicaid. (Liam James Doyle/NPR)

Tymia and her mother, Susie Pitts, head to the U.S. Capitol last week to lobby South Carolina lawmakers on health care, particularly the importance of Medicaid. (Liam James Doyle/NPR)

Tymia enters the office of South Carolina Rep. Mark Sanford, a Republican, as part of a lobbying trip organized by the Children's Hospital Association. (Liam James Doyle/NPR)

Tymia enters the office of South Carolina Rep. Mark Sanford, a Republican, as part of a lobbying trip organized by the Children's Hospital Association. (Liam James Doyle/NPR)

Sanford, who opposed the House version of the health care bill, tells Tymia: "I hear you loud and clear on the Medicaid front." (Liam James Doyle/NPR)

Sanford, who opposed the House version of the health care bill, tells Tymia: "I hear you loud and clear on the Medicaid front." (Liam James Doyle/NPR)

Tymia becomes emotional while telling Sanford about living with sickle-cell anemia, a genetic condition that leads to rigid and malformed red blood cells that don't carry oxygen well and can suddenly block blood flow. (Liam James Doyle/NPR)

Tymia becomes emotional while telling Sanford about living with sickle-cell anemia, a genetic condition that leads to rigid and malformed red blood cells that don't carry oxygen well and can suddenly block blood flow. (Liam James Doyle/NPR)

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Tymia also stopped by the office of Sen. Lindsey Graham, a Republican from South Carolina, to express her opposition to any health care reform that would curb the Medicaid benefits she relies on. (Liam James Doyle/NPR)

Tymia also stopped by the office of Sen. Lindsey Graham, a Republican from South Carolina, to express her opposition to any health care reform that would curb the Medicaid benefits she relies on. (Liam James Doyle/NPR)

Tymia also stopped by the office of Sen. Lindsey Graham, a Republican from South Carolina, to express her opposition to any health care reform that would curb the Medicaid benefits she relies on. (Liam James Doyle/NPR)

Tymia also stopped by the office of Sen. Lindsey Graham, a Republican from South Carolina, to express her opposition to any health care reform that would curb the Medicaid benefits she relies on. (Liam James Doyle/NPR)

Tymia takes the stairs in the Rayburn House Office Building on her way to meet with Sanford. By the end of the day, she was using a wheelchair. (Liam James Doyle/NPR)

Tymia takes the stairs in the Rayburn House Office Building on her way to meet with Sanford. By the end of the day, she was using a wheelchair. (Liam James Doyle/NPR)