Caregiver, patient advocate
Her story: It was not until their daughter was born five years ago with SCD that Tanielle Randall and her husband found out he was a carrier of the disease. Two years later, she would discover that her second child had the disease. But Randall quickly decided she had to “emotionally move past the fact that my children have this illness and start being proactive and the best parent I could be.” So she dug in, learning everything she could, and eventually joined the board of the Kids Conquering Sickle Cell Disease Foundation. Now, in addition to holding down a full-time job while caring for her daughters, Randall offers resources and advice to other families who are on a similar journey.
Biggest challenge: “In advocating for my children, I feel I’m in constant battle. Having to be so knowledgeable, having to pay attention to everything doctors are telling me and holding them accountable day in and day out—why are you increasing the dose and why now? It can be frustrating. For many of these health care providers, your child is patient #645. But as a parent, you’re thinking, ‘This is not just another patient. This is my child!’”
What keeps her going: “My faith. The fact that I ended up with not one, but two children with this chronic illness is for a reason. Nothing happens by chance, and I think it was His way of saying I want you to draw on your strength and expertise to take care of these children. For me, it’s a higher calling.”
Her hope: “I hope we can increase awareness in the world overall—and also increase compassion. Because as parents of kids with sickle cell—we didn’t choose this life. In some small sense we see it as a gift, but it’s also a struggle, and we could use more understanding, more social programs that help.”