By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
Last week, Ashae Villafana told her mom she wanted to be a lawyer. The week before that, she considered becoming a police officer. In between, she fantasizes about being a YouTube star.
But right now, 10-year-old Ashae is an ambassador, specifically an ambassador for sickle cell patients.
And her message is that kids with sickle cell disease can do and be anything they want.
Today is World Sickle Cell Day, a day that aligns with Juneteenth on the calendar, commemorating the end of slavery.
Sickle cell is an inherited blood disorder that causes infections, severe pain and fatigue. Most common in people of African heritage, it afflicts an estimated 70,000 to 100,000 people in the United States.
Ashae, who moved to Indianapolis two years ago from New York with her mom, Amawi Villafana Williams, was diagnosed with the disease a week after her birth.
Unbeknownst to Williams, she and Ashae’s father both carried the sickle cell trait. People with sickle cell trait are generally healthy and often do not know they carry it, but two parents who carry the trait have a 25% higher risk of passing sickle cell disease on to their children.
Fortunately for Ashae, she is under the care of physicians at Riley Children’s Health and the hospital’s Pediatric Sickle Cell Disease and Hemoglobinopathy program.
“Having a comprehensive sickle cell program that provides multidisciplinary care as well as the co-location of subspecialists alongside hematologists to deliver high-quality, cutting-edge care is what makes our program unique,” said Dr. Seethal Jacob, director of the program.
Williams said when her job brought her to Indianapolis, she knew that Riley would give her daughter the care she needed. Recently, Ashae was tapped to be the 2022 Youth Ambassador for the Martin Center Sickle Cell Initiative in Indianapolis.
Martin Center is a human services agency providing programs and services to people battling the effects of sickle cell in the community.
“I have learned so much about how the disease affects my body and how to treat it,” Ashae said. “As a result, I am not in the hospital as much as I used to be.”
Ashae sees hematologist Dr. Meghan Drayton Jackson in the Riley Sickle Cell Clinic.
As an ambassador, the fifth-grader will be the face of the Martin Center Sickle Cell Initiative, her mom said, adding that “she wants to show kids her age that even though they have sickle cell, they can do anything and be anything they want to be.”
Ashae is still deciding what she wants to be, but nothing holds her back, Williams said. She loves to swim, dance and compose skits for her YouTube channel.
“She’s very funny. Where she gets her energy, I don’t know, but she is outgoing and loves to try new things.”