St. Jude patient Stories: Yara
Yara was hospitalized with RSV and pneumonia in the fall of 2022 and could not get better, which led doctors to request more tests.Yara, who was 3 years old at the time, was later referred to St. Jude Children’s Research Hospital®. Tests revealed that the little girl had SAMD9/SAMD9L syndrome, a rare disease caused by gene mutations. The bone marrow in patients with the syndrome cannot make enough blood stem cells. Sometimes, the condition gets better on its own. Other times, it can develop into leukemia. At St. Jude, Yara has received blood transfusions. Since the disorder is hard to predict, doctors monitor Yara closely, said her mom, Brittany. Brittany said living in Tennessee she had known of St. Jude prior to Yara’s diagnosis and had supported fundraisers for the hospital, but she didn’t know that St. Jude treated children with illnesses other than cancer. “You learn as a patient how amazing the research is,” she said. “They say it takes a village to raise a child. St. Jude is part of our village, and they are the healthcare part of our village. We can just make sure she is happy, and they make sure she’s healthy.” Yara, the middle child of 5, will start kindergarten in 2024. She likes art and all things girly, including playing with her dolls, and getting her hair and nails done. She also enjoys traveling with her family. Her favorite destinations are anywhere with sand and water, her mom said.