MILWAUKEE — Tokara Henry can’t help but smile when thinking of her cousin Carlotta Thomas. 

“She was bubbly, she was full of life,” said Henry. “She was not to be toyed with at all.” 

Henry said she was like an older sister and someone Thomas could always lean on.

But Thomas’ was life was cut short. She passed away just over 10 years ago after complications from sickle cell disease.

“I loved every minute being with her,” said Henry. “Even in her final days I got the call from her mom. I rushed to the hospital and was there by her bedside when she took her last breath.” 

Sickle cell disease is a genetic blood condition when there isn’t enough hemoglobin in the red blood cells. 

“Anywhere there’s blood flow you can have a crisis,” said Henry. “A crisis is when those sickle-shaped blood cells, the sticky-pointed blood cells, they get stuck in one area. It’s extremely painful and be fatal.” 

Sickle cell disease impacts around 100,000 people in the U.S., according to the Centers for Disease Control and Prevention. More than 90% of that number are African American. 

Henry said it was her cousin’s dream to start an organization that supports those with sickle cell disease. That led her to start Sickle Cell Warriors of Wisconsin in 2015.

“As a community-based organization, our job is to fulfill the non-community needs of what we serve,” said Henry. 

The organization hosts galas, fundraising walks, provides transportation and even does advocacy work. It is serving the Badger State by providing support and resources. 

“Sickle cell disease impacts so many people,” said Henry. “One of three people are impacted by sickle cell disease, but when we think on a broader level: how is our community impacted by sickle cell disease?” 

The organization has become Henry’s life’s work, not only in honor of her cousin but for Wisconsinites living with the disease.