New treatments being developed for sickle cell disease
Kenya Buckley made a promise to honor her mother’s death by helping others.
Today, she is keeping that promise through the Carol’s Promise Sickle Cell Foundation, which Buckley founded and launched in 2017. Her mother, Carol Groover, passed away in 2005 from sickle cell disease (SCD).
The mission behind Carol’s Promise is to spread awareness, be an advocate, and support those who have been affected by the disease.
And, thanks to Buckley’s storytelling talents, the foundation is becoming known nationwide. She recently wrote a story about her mother as part of Grammy nominee and film star Jordin Sparks’ Generation S project. Five individuals from across the United States were selected to tell stories about being affected by SCD, and she was one.
Buckley, 37, wrote about her mother and her lifelong battle with SCD.
“I wrote about my life growing up with a mother with a chronic illness and how it affected my life. I wrote about her passing away from complications of SCD two weeks after I graduated from college,” Buckley said.
“My mother was my inspiration for starting my foundation and writing the story. She always had dreams of writing a book to tell her story but was not able to. This is my way of telling her story in hopes that it can help someone else so that her death is not in vain.”
Generation S is a national campaign started by Novartis Pharmaceutical Company. The idea is to raise awareness for SCD and show the world what living with SCD is really like, also giving a voice to a generation of people who have been silenced.
“Filmmakers came to our hometowns and shot a mini-documentary about our families and our stories,” Buckley said.
Sparks and the five featured Generation S storytellers are launching a public service announcement in September (which is National Sickle Cell Awareness Month) to raise awareness about the severity and unpredictability of SCD pain crises, and inspire more empathy and support for patients.
The hundreds of inspirational stories submitted to Generation S, including Buckley’s, are now being showcased on JoinGenS.com.
Buckley, who is a utilities accounting analyst in the City of Arlington Water Utilities Department, does not have a background in writing. Her degree is in accounting, and she works with numbers and spreadsheets daily. However, she said she has learned a thing or two about following a passion.
“I’ve learned that if you are truly passionate about something, then God will articulate the words for you,” she said. “I’m so blessed and happy that someone saw the passion, pain and triumph in my story to pick me.
“I have never thought of myself as a short story writer, but I am not opposed to it. I write with my heart and have been able to touch people’s soul. For that I am forever grateful and open to all opportunities.”
Buckleysaid she originally “founded” Carol’s Sickle Cell Foundation in 2005 at the timing of her mother’s passing. A dozen years later, after much hard work, it came to fruition.
“It’s a promise that I made my mother to tell her story and help find a cure for SCD. Our mission is to increase the quality of life for individuals living with Sickle Cell,” Buckley said. “We try to raise awareness 365 days a year on as many platforms at possible.”
Among the work of the foundation is holding summits to educate the public and even healthcare professionals, Buckley said. They also provide support and resources for families in Tarrant County.
“We are a new organization but we have hit the ground running because we know that the patients in Tarrant County desperately need our help,” she said.
The foundation also holds quarterly support group meetings, prescription assistance, and transportation to hospitals. They also provide care packages to youngsters at Cook Children’s Medical Center, along with tutoring kids who have long hospital stays, also helping with school supplies.
They also work to make Christmas special with an annual holiday party to alleviate the financial burden on parents for presents.
“We are building relationships with our families that I hope last a lifetime,” Buckley said.
Like the one she has with her late mother.
“I hope that I am setting the foundation for my family and that my children, nieces, nephews and younger cousins keep building on the foundation and achieve all of their goals and live in their purpose,” she said.
And she plans to keep telling her mom’s story to whoever will listen — or read it.
“My grammar my not be perfect, the commas may be out of place but God articulates my words,” Buckley said. “My passion for helping people living with SCD is what moves me. This is my purpose in life and I am OK with that.”
Carol’s Promise is always looking for community partners, sponsorship, and personal donations to continue with their mission. If interested, email email@example.com or donate directly at the website.