He was a beloved warrior in fighting sickle cell disease, inspiring many along the way
In my December 2017 column, “Sickle cell group is making a difference in people’s lives,” Juan Caballero, then 67, expressed thanks for his many decades of living, despite having sickle cell disease.
A support group facilitator for Advancing Sickle Cell Advocacy Project (ASAP), he encouraged those who suffered from the disease, a red blood cell disorder that affects about 100,000 people in the United States, primarily people of color. He and several others were defying the odds by living beyond sickle cell’s average life expectancy of approximately 60 years.
Brave and unyielding Juan Caballero, adoringly called ‘Mr. C,” passed away on June 15, 2024, shortly after his 74th birthday.
“His 74 years were marked by courage, resilience and an unwavering spirit in the face of adversity,” said Kemba Gosier, president of the Advancing Sickle Cell Advocacy Project, which is based in Miami Gardens. “Several weeks ago on his birthday we celebrated with him, his life and legacy as our warrior hero. A group of us took an award to him in the hospital and presented it to him.”
“Mr. C’’ was recognized posthumously last month at the inaugural Kevin J. Francis Memorial Scholarship & Awards Luncheon at Miami Shores Country Club.
Scholarships for students with sickle cell
“This inaugural scholarship luncheon is named in memory of Kevin, a beloved sickle cell warrior who sadly passed away in 2011 at the age of 23 while admirably pursuing his education despite experiencing numerous hardships and setbacks due to his illness, “ said Gosier.
“Kevin’s tenacity to earn a degree in spite of his struggles with sickle disease did not go in vain, but inspired members of ASAP to assist students diagnosed with sickle cell disease to obtain a higher education who otherwise may be left behind.”
The luncheon’s keynote speaker was Dr. Joy Ogunsile, medical director of Memorial Healthcare System’s sickle cell day center in Hollywood.
In April, the nonprofit held a town hall in Miami Gardens where experts and those living with the disease spoke about gene theory, clinical trials, bone marrow transplants, legislative advocacy and personal stories.
Among those who led the town hall were: State Rep. Felicia Robinson, the Democrat who represents northwest Miami-Dade and southwest Broward; doctors Thomas Harrington and Edward Ziga, an adult hematologist and pediatric hematologist, respectively, with the University of Miami Health System; Dr. Neil Miransky, a sickle cell expert with Baptist Health South Florida; and representatives from Bluebird Bio & Vertex Pharmaceuticals, two companies that recently developed gene therapies for treating sickle cell disease.
In December, the Food and Drug Administration approved a new therapy from each company — Casgevy from Vertex and Lyfgenia from Bluebird Bio — calling them “milestone treatments.”
Daughter’s journey with sickle cell
Gosier helped found the Sickle Cell Advocacy Project in 2015 after her eldest daughter was diagnosed with sickle cell when she was an infant.
“She just writhes in pain, screams,” Gosier told the Herald in a 1997 article about sickle cell, noting her then 8-year-old daughter had been treated at Jackson Memorial Hospital 33 times.
She’s now 34 and has had multiple hospitalizations including a hip replacement when she was 18, which left her with chronic daily pain, Gosier says.
“It is not an easy journey living with sickle cell. It affects every aspect of your life, from the smallest things like being able to have enough energy to get out and go to Walmart to pick up a few things or as major being able to hold down steady employment to feel self-sufficient,’’ Gosier said. “But despite the challenges, she is resilient as warriors are and continues to fight every day and be an inspiration for me. We thank God for the good days and lean on our faith to get through the bad ones.”
Sickle Cell Advocacy Project is a 501 c(3) nonprofit organization that educates and advocates for those living with sickle cell disease and provides support services to the sickle cell community in South Florida. To learn more about the group, call 954-951-1108 or go to http://asapbeinformed.org
Dorothy Jenkins Fields, Ph.D., is a public historian, certified archivist, historic preservationist and founder of The Black Archives, History and Research Foundation of South Florida. She can be reached at djf@bellsouth.net
