Aaliyah has received treatment for sickle cell disease at St. Jude since she was a newborn. Find out what St. Jude is doing to expand this lifesaving program to help save more children, like Aaliyah.
Sickle cell disease is a painful inherited blood disorder that can cause anemia, organ damage and even death. It affects 1 in 365 African-American children in the United States — children like Aaliyah.
Four-year-old Aaliyah has received treatment for sickle cell disease at St. Jude Children’s Research Hospital since she was only weeks old. Since then, Aaliyah has had her spleen removed as part of her treatment, and she was one of the youngest St. Jude patients to begin taking a daily medication called hydroxyurea, which can lower the number of trips to the hospital. She also takes penicillin daily, and comes to St. Jude regularly for checkups.
“When you put St. Jude at the top of the list as family, there’s really no higher that you can go,” said her mom, Tamara. “All her doctors, all her nurses, everyone we’ve been in contact with, we’re still in contact with them today. Anytime I call, they’ll get back with us right away.”
St. Jude has a history of commitment to sickle cell patients. The first research grant awarded to St. Jude — even before the hospital doors opened in 1962 — was for sickle cell disease. We have one of the largest sickle cell disease programs in the country, and one of our patients was the first person in the world to be cured of sickle cell disease through a bone marrow transplant.
Today, we’re building on that legacy by expanding our sickle cell program from treating the disease to searching for cures.
- We’re developing a bone marrow transplant program for sickle cell patients. This program will identify children who could benefit the most from transplants, develop new clinical trials to improve success rates and work to decrease transplant–related side effects.
- We recently opened a study called the Sickle Cell Clinical Research and Intervention Program (SCCRIP). Participants in this study return to St. Jude for checkups every six years. SCCRIP will improve understanding of how the disease progresses and provide health screenings for patients. Scientists in the program will also sequence patients’ genes to figure out how genetic changes affect the severity of the disease.
- We’re also expanding research efforts to include using gene therapy or gene editing in an effort to cure sickle cell disease.
Aaliyah’s dad, Derrick said, “Aaliyah continues to mature into a beautiful, healthy little angel who is a source of so much joy to all who know her. Her progress is the direct result of the care provided by St. Jude.”