Sickle cell disease has shaped our lives personally through lived experience, family loss, and the realization of how much remains unknown and unspoken.

For Bo, sickle cell has been present for as long as he can remember. Multiple family members were affected, but the deepest impact came from watching his youngest brother, Milton Gilliam, live with the disease. Milton endured chronic pain in his legs, arms, and back from a young age, yet faced each day with remarkable strength. Doctors once said he would not survive past the age of two. Then eight. Then twelve. Then twenty-one. Milton lived to be 48 years old defying every prediction, in part due to clinical trials and his own determination. Bo became accustomed to watching him administer his own blood transfusions,  and monitoring his vital signs, while fighting through unimaginable pain.

Despite being the youngest and physically battling sickle cell daily, Milton was the foundation of his family. He was their source of wisdom, faith, and strength. Their teacher, preacher, caretaker, and guide. Even in his final days, Milton remained hopeful. Before his passing, he gave Bo a charge that would change everything: “Big brother, do something about it. Let them know that sickle cell is still alive.”

For his wife Marilyn, sickle cell was not something she grew up knowing about. It became real when she got married. Her husband carried the sickle cell trait, and his mother having already lost a son to the disease insisted they be tested before marriage. At the time, blood testing and education were required to obtain a marriage license. Through a public health nurse, they learned not only about the trait, but also the importance of testing children early, educating them, and preparing future generations to make informed decisions.

What stood out most was how rare these conversations were. Too often, people only learn about sickle cell when it already exists in their family. For generations, families avoided discussing it due to stigma even though it is hereditary and manageable with knowledge and care. That silence has lasting consequences.

Together, our experiences revealed the same truth: awareness saves lives. Honest, sometimes uncomfortable conversations must happen.  

This is why we do this work! To honor those we’ve lost, amplify voices that have been silenced, encourage testing and transparency, and to push forward with the mission.