Ashae Villafana: 2024 Riley Champion
“Never give up. You got this!” These wise words from 11-year-old Ashae Villafana are what she tells other kids learning to live with chronic disease. It’s what she told herself as she grew up in and out of the hospital due to sickle cell disease.
When Ashae and her mother, Amawi, moved to Indianapolis in 2019, they knew they needed to find a top healthcare provider. All research pointed to Riley Children’s Health. With one of the largest and most robust sickle cell programs in the Midwest, they knew the multi-disciplinary care at Riley Children’s, with access to pulmonary, neurology, adolescent medicine, psychology and more, was just what they needed.
Ashae was just one week old when she was diagnosed with sickle cell, an inherited red blood cell disorder that can cause blocked blood flow resulting in severe pain, infection and fatigue. Ashae’s first pain crisis was near her first birthday. Since then, she’s had a few more and has learned how to manage her disease and symptoms.
“When I talk to other kids with diseases like mine, I tell them to stay strong and keep your head up,” Ashae said. “Don’t let this stop you from doing what you love to do.”
She says Riley, where she sees Meghan Drayton Jackson, M.D., a pediatric hematologist, is a place of comfort for her — a home away from home.
“Despite her disease, Ashae always maintains a positive outlook. When you look at her, you would never be able to tell she has a chronic disease between hospitalization and vaso-occlusive episodes,” said Dr. Drayton Jackson. “Her outgoing nature, resilience and positive outlook while she lives with a chronic disease is something to aspire to.”
What does Ashae love to do? Easy — sports. When she’s not busy being an honor roll student, Ashae loves to swim, run, play basketball and soccer, and make fun videos for her YouTube channel. She is determined not to let her disease stop her from doing what she loves.
“When I grow up, I might want to be a doctor to help other people with diseases like me. I might want to be a social media influencer because I enjoy making videos for YouTube and I can talk about my disease and my experience.”
No matter what path Ashae chooses to take, one thing is for certain: She will not let her disease stop her from doing what she loves and being who she wants to be.