The first thing Vanessa Finch wanted after her son died was simple: to continue to hear his name.
Kahleeb Beckett, affectionately called Leebo, lived with sickle cell disease, genotype SS, for 23 years. As a concerned mother, Finch spent much of those years learning how to navigate a health care system that she found did not always listen.
“Health care is a business, but for us, it is deeply personal,” she said. Having a chronically ill population from which billions are made, yet the treatment is unequal, means that those of us from within have to rise up to fight for better.”
The Centers for Disease Control and Prevention (CDC) describes sickle cell disease (SCD) as an inherited blood disorder that causes the bone marrow to produce abnormal hemoglobin (blood cells). These abnormal blood cells are inflexible and are poor carriers of oxygen throughout the body, resulting in complications such as excruciating pain, chronic anemia, organ failure, and shortened lifespan.
Understanding the devastating complications of the disease firsthand, Finch— fueled by her grief for her son, who died in 2021— founded Leebo’s Sickle Cell Support Group in 2023. A national platform for education and advocacy, the nonprofit represents a broader shift in which patients, parents, and caregivers are no longer content to solely be the people discussed in medical offices, research meetings, and policy rooms.
They are stepping up to lead the discussions themselves.
“The new generation is adept at research; they were born with it at their fingertips. They question. We didn’t,” Finch, 56, explained. “However, our generation has lived experience, wisdom, honed instinct. Collectively, we are learning how to combine both approaches, and the result is a game changer.”
The Miseducated Become the Educators
For a community that has spent generations being told what to believe about its own disease, educating themselves is becoming a form of power.
Dr. Shanetta Richardson, 47, president of the Sickle Cell Association of the National Capital Area (SCANCA), believes those living with SCD must be at the center of their own education because no medical journal can fully capture the reality of living inside the disease.
“It is important that we are now doing the teaching and advocating because we are living with it every day, learning quickly, and adapting,” Richardson said. “It is very difficult for people, even medical personnel, to understand and speak to the unique experience of our entire population.”
Those with sickle cell disease can experience vastly different symptoms, complications, and responses to treatment. Richardson learned early that navigating those differences required more than simply following a long series of medical instructions.
“Spending so much time in a hospital system and noticing those who couldn’t advocate for themselves taught me early the power of one’s voice,” she said.
That voice, she said, is growing louder at a moment when medical possibilities for sickle cell treatment are changing, too. Although there is no universal cure for sickle cell disease, curative and transformative therapies have introduced possibilities that previous generations were unable to even imagine.
“At every appointment, sickle cell warriors used to be given a death sentence,” Richardson said. “Now, curative and transformative therapies are becoming part of the discussion.”
For Richardson, the new conversation around treatment for sickle cell disease demands a new mindset: more education, more empathy, more resources and less judgment.
“Now there is hope,” she continued, “and it is our responsibility to take that hope and build a future for ourselves that no one expected us to live long enough to realize.”
From Fragmented Voices to Collective Power
For all the progress being made, advocates say the sickle cell community still faces a fundamental obstacle: it has not always been organized into a single powerful voice.
DeMitrious Wyant, 39, activist, believes that years of limited resources and fragmented efforts have made it harder for the public to see the people behind the disease.
“To a degree, we have been divided,” said the executive director of The Rare Care Foundation. “We form mini entities that do similar things, so instead of major financing as a unit 50- to a 100,000-strong, we have historically competed for the same resources but in much smaller groups.”
Wyant believes sickle cell advocates must also begin presenting the public with something more impactful than individual organizations: the human beings whose lives are shaped by the disease.
“When people see sickle cell disease, they see an organization,” he said. “The people suffering from the disease are rarely shown.”
Wyant, who lives with sickle cell disease, believes that fragmentation must give way to collective action, particularly for a population that has historically been expected to accept less.
“When you see cancer, you see people, families, love, stories of courage, the tragedy of loss. That human understanding builds connection, draws people to rally for a cause,” he explained. “Sickle cell disease has never been positioned in this light, because we, as one powerful collective, have never created it.”
Richardson also emphasized the importance of increasing visibility for those suffering from sickle cell disease.
“Empathy starts when people understand and can relate their struggle to yours,” she said. “It is impossible to empathize with a disease whose suffering remains unseen.”
For Finch, a mother still early in grief from the loss of a son, sharing the faces, the names, and the stories of those now suffering, and those lost to sickle cell disease has now become her life’s mission.
“We have lost too many too early to sickle cell disease,” she said. “We owe it to them to work together to ensure that fewer families continue to suffer such unimaginable loss.”
As she works to encourage others to join in her advocacy, Finch offered a direct charge: “It’s time that the cure starts from within.”
This reporter has genotype SS, the most aggressive form of sickle cell disease. She lectures and advocates nationally for the inclusion of mental health support and holistic and alternative medicine as treatment for those with chronic illnesses.
Absolutely powerful article and message. There is so much power in connection and collaboration. When Sickle Cell organizations, advocates, Warriors, caregivers, researchers, and healthcare partners share resources, amplify voices, and work together, our collective impact grows. We must continue building bridges that bring hope, improve lives today, and move us closer to a safe, accessible, and broadly available cure for all.
A powerful and important article highlighting the voices, experiences, and leadership of the sickle cell community. As a warrior and advocate, I believe our voices must be at the center of the conversation.
Thank you to Dr. Patrice Holden and The Washington Informer for amplifying our stories and reminding us that we are not just living with sickle cell; we are leading the movement for change.
Dr. Shanetta Richardson is not merely surviving sickle cell; she is transforming it. She has taken a condition that was meant to break her and turned it into a platform to educate, uplift, and advocate for countless others. That is true leadership, true ministry, and true purpose. As her father, I am incredibly proud of all her achievements and accomplishments in life. The one thing I do know is that when you prioritize God, there is nothing you cannot accomplish.
Dr. Shanetta Richardson is not merely surviving sickle cell; she is transforming it. She has taken a condition that was meant to break her and turned it into a platform to educate, uplift, and advocate for countless others. That is true leadership, true ministry, and true purpose. As her father, I am incredibly proud of all her achievements and accomplishments in life. The one thing I do know is that when you prioritize God, there is nothing you cannot accomplish.
Awesome article which alluded to many truths. My first thought presents in the form of spoken word. “I feel like my back is against a brick wall and I got a Mack truck 2 inches from my face! Every cell in my body is screaming, RUN, but I can’t. I’m kicking, and screaming, running & jumping, wreaking all kinds of havoc, creating a bloody mess and I am going no where!” I live & advocate for SCD. Born with the SS genotype & 6 decades of lived experience. I wholeheartedly agree with Dr. Richardson, Vanessa Finch, & DiMitrius Wyant. Warriors do not need the fragmented version from tons of organizations. We are advocating heavy to be seen, heard and considered akin to the Michelin star afforded oncology (cancer) patients as our costs for new therapies is equivalent. End disparities! I’ll remain on the battlefield! ❤️🩹🩸💪🏾🙌🏽
Such a powerful article!! This is the definite start of the change that’s needed right here. When the organizations,families, caregivers stand together there’s no amount of anything that will stand in the way I know for a fact that this is the start of something so beautiful and anyway that I can help I will be there hand in hand. Always praying for and with you all.
The strength of these words will move folks to action!
There is so much power on display when I see these names and faces !!!
The doors Vanessa Finch is knocking on and some kicking down for the name of her son gives other families not just hope but a platform to find some education, community & understanding on such a deadly disease. You are not alone sicklers! Say his name “LEEBO” the name that rings hope thru the sickle cell community. Vanessa continues to shine in her darkest days for her son, who I am sure walks the walk with her with pride saying say my moms name “VANESSA”!!!!
Excellent article. Knowledge is power. This is unfortunately the state of Health care where we must educate ourselves, gain experience and then educate others.
Vanessa, I’m so proud of the work you continue to do. You have stayed committed to helping families, raising awareness, and speaking up for people living with sickle cell disease in a way that is both needed and deeply personal.
What I love most is that Leebo is still right there in the heart of it all. His name is still being spoken, his story is still being shared, and his life continues to have an impact through the work you are doing.
Keep going, Vanessa. You are honoring Kahleeb “Leebo” Beckett in such a meaningful way.
This was such a powerful read. Living with or watching a loved one deal with sickle cell is a heavy journey that far too many people just don’t see or understand. I’m so proud of leaders like, you, Dr. Richardson, DeMitrious, and Vanessa for stepping up, sharing their strength, and making sure the community’s real stories are finally front and center. Sending so much love and support to everyone fighting this fight every single day.
Vanessa is touch so many people and giving information that is needed for those that are suffering to advocate for themselves. She is truly a blessing. Hearing how some doctors over look patients telling how they truly feel is disheartening. Leebo keep spreading information and understanding what goes on behind the scene in healthcare.
This is the change and VOICE NEEDED FOR OUR CULUTRE… we need more advocacy of this disease to bring more help more truth more compassion to a community of people who themselves dont understand nor do their families. We must not forget Leebo and others and bring more recognition to this disese.
We release into the atmosphere and call forth change for the urgency of the Sickle Cell Souljah’s as well as the care takers. Through prayer, supplication, and thanksgiving we are making our request known. We want justice over the Adversary. In The Mighty Name of Jesus.
I love this, honestly this is a topic that needs to be had I feel like we wouldn’t have to fight so hard for resources and use much energy if we all just came together and put (emotions) to the side which is easier said than done but I have faith that we will all put our pride to the side and dominate to evolve into greater things in the future.
This is a powerful and moving article addressing a much neglected topic. We need more advocacy fighting for equitable access to all the new and promising treatments for SC that are often incredibly expensive and yes, more visibility for what families go through. Thank you, Patrice Holden!
As a proud aunt, I am deeply moved by Vanessa’s courage, compassion, and commitment to turning her profound loss into meaningful advocacy. Her love for Leebo continues to inspire a mission that is bringing education, awareness, and a stronger voice to the sickle cell community.
Vanessa, your strength and dedication are a beautiful testament to Leebo’s life and legacy. I am incredibly proud of you and honored to witness the impact of your work. Keep shining and keep advocating. ❤️
To Dr. Holden, and respectfully to every warrior currently living with SS, and to every surviving family member mentioned in this captivating article, we honor you as you make the faces and names known to our community, and to all those who care because our people are not statistics—we are human beings.
After reading this article, I know more about the people living with SS disease, who are coming out from the shadows, so that we can better support their healing advocacy work. I’m sending Love to Mamma Vanessa, Advocate Demitrious, and Angel Leebo 🫶🏾
My background in public health has taught me that health disparities are not simply about access to care, they are also about whose pain is believed, whose experiences are seen, and whose health receives the urgency and resources it deserves.
Sickle cell warriors and their families deserve equitable care, greater investment in research, stronger advocacy, and most importantly, a seat at the table when decisions are being made about their lives and their health.
I am proud to stand alongside those doing this important work and to use my voice and service to help advance a future where every person living with sickle cell is seen, heard, supported, and valued. ❤️🩸
As being Vanessa‘s little brother, I have seen her struggles and her joy. I watched how she made sacrifices and continues to do so. Some may see her as a sickle cell warrior. I see her as a warrior of life. She stood by my wife and her fight against cancer. She was there for me when I had medical issues and how she takes care of my mother and father 100 miles apart. At the same time she takes care of her family. She truly is the rock of the family and we just love her so much, are grateful for her and thanks God that he gave her to us.
This is great information, very informative. I am so happy my Cousin Vanessa is getting this information widely spread, it is so very necessary as a caring family member of my beloved cousin Leebo my heart hurts to learn exactly what he was dealing with. I promise it was hard to tell by the way he had always showed up and shared so much love. It was always amazing to be in his presence, he is truly missed and will never be forgotten. I am so proud of his mother, my Cousin Vanessa for continuing this fight and keeping my younger cousin’s name alive. Long live Leebo!💙Signed with love, by their cousin Tina.
I truly appreciate this article and the way Dr. Patrise Holden brought together the voices of different generations in the sickle cell community. The older generation has lived experience, wisdom, and lessons that came from years of fighting and learning, while the younger generation has new tools, new information, and the confidence to ask questions. We need both. I am grateful that Leebo’s story and the work of Leebo’s Sickle Cell Support Group were included, but I also appreciate that this article was bigger than just one person or one organization. It showed that when we listen to each other, learn from each other, and work together, we can make a greater difference for the whole sickle cell community. Thank you, Dr. Holden, for telling these stories with so much care and respect.
This article hit differently for me.
I never knew much about Sickle Cell Disease until I met Dr. Holden and had the opportunity to witness parts of her journey. No, I am not all in her medical business or asking what is in her medical records 😂 — but I do have two eyes, two ears, a big mouth, and a heart. Simply paying attention, listening, and caring taught me how easily people who are fighting to live every day can still fall under the radar.
And that is exactly why stories like Kahleeb Beckett’s, and the advocacy born from his mother Vanessa Finch’s grief, matter so much.
Vanessa spent years learning how to navigate a health care system that did not always listen. After losing her son in 2021, she turned that grief into purpose by founding Leebo’s Sickle Cell Support Group — creating a platform for education, advocacy, and a stronger voice for patients, parents, and caregivers.
What stood out to me most in this article is the larger message: people living with Sickle Cell Disease and the families who love and care for them are no longer willing to simply be the people discussed in medical offices, research meetings, and policy rooms. They are demanding a seat at the table, telling their own stories, educating communities, and helping shape the conversations and decisions that directly affect their lives.
The less we know about a disease, the easier it becomes to overlook the people living with it. And that lack of understanding can exist everywhere — even within health care. That is why these voices are so important. Awareness creates understanding. Understanding creates compassion. And compassion, paired with advocacy, can create change.
These stories also make the phrase “tomorrow is not promised” feel very different. Imagine living with a disease that can make the present feel unbearable, yet continuing to fight just to see tomorrow.
So we keep listening. We keep learning. We keep sharing. And we continue standing with the patients, families, caregivers, advocates, and medical professionals working to make sure Sickle Cell Disease is no longer overlooked.
One band. One sound. We stand in solidarity with every voice fighting for Sickle Cell awareness, equity, compassion, and change. ❤️
I’m Honored to get to tell my story, our story, speak my truth and be present in the moment. Sickle cell has come a long way yet we have so far to go. I’m standing on the frontline vulnerable and unashamed of the trauma and pain sickle cell has caused. For every child that battles the pain and the stigmas, for every caregiver that loses sleep and jobs taking care of us, for every community partner bringing education and awareness for sickle cell disease I pray for you. In the name of Sickle Cell. For every parent that has lost a child due to sickle cell my heart goes out to you. May the smiles and the triumphs warm your soul to know your child was special.
Unlearning and relearning is not easy, but finding healthy alternatives to live well with sickle cell is rewarding. Give yourself grace and take your time, healing is a process. Forever in my thoughts and prayers. BIG Love Only!
I prayer this article reaches the masses I’m so proud of Rare Care, Leebo Sickle Cell Support Group, Vanessa Finch & Dr Patrise Holden and all the work they’re doing for the sickle Cell Community! They’ve put a positive light on it in a way I’ve never seen since coming to the community almost 17:years ago after creating a symbol called Cilly Cell that Id like to see as a national symbol for Sickle Cell like the pink ribbon for breast cancer. I still believe we can come together as one day and change this community forever
I am privileged to work with and to learn from people living with sickle cell disease and to see the growing power of the community coming together. Thank you for bringing these stories to light.
Education, communication, research, and advocacy are key issues for understanding and treating Sickle Cell. This is a great article. More articles are needed to help with awareness and treatments.
Dr. Holden, I finally had a chance to really sit down and read your article, and I am sitting here crying.
I don’t even know if you realize what you did for me when you opened that article with my need for the world to say my son’s name. You put Leebo’s name out front, in print, for people I may never meet to read and to say his name. As his mother, I cannot explain what that did to my SOUL!!!! U hear me!!! Thats what makes me human again. I spend so much of my life trying to make sure Kahleeb Beckett is never forgotten, and you understood that without me having to explain it over and over.
Then you took something I have said so many times about me being old-school, from the generation where the doctor said it and we listened. Boy have things changed lol. Once again You turned it into something everybody could understand. You showed the difference between my generation and this generation of warriors who are learning that they can ask questions, challenge things, learn their own bodies and have a voice in their care. You didn’t make either generation sound wrong. You made us understand each other. Thank you for that merge.
And what made the article even more powerful is the other people you interviewed.
You allowed the other woman you interviewed to bring her truth, and then the prophet made that point about how we can spend so much time looking at doctors, organizations and sponsors that we forget to look at the actual people living with sickle cell. That stayed with me. I hope that’s what he meant because that’s how I took it and sometimes you know me my head see things different lol. It made me look at myself and Leebo’s Sickle Cell Support Group and realize I have to keep making more room for the warriors and the families themselves. Your article is making me look at how I view the way Leebo’s support group runs. I kind of want to start putting the Warriors upfront more and not so much other things. I don’t know. It’s hard to explain, but you really put a different spin on it in my head, believe it or not.
It’s just that the article taught me something about my own work.
Dr. Holden, I know you stand up for Leebo’s Sickle Cell Support Group, but what I need you to know is that I see something much deeper than that.
You stand up for me.
You stand up for Kahleeb.
You stand up for the mother who is still trying to make something meaningful out of losing her child.
You take the words that come out of my heart that are sometimes broken, sometimes all over the place and you somehow understand exactly what I am trying to say. Thank you for giving my words, dignity, respect, and now longevity.
There is no amount of “thank you” that could ever explain what that means to Vanessa Finch.
You made sure my son’s name was said.
You made sure his life mattered on that page.
Six dollars
I love you, Dr. Holden. I appreciate you. And I will never forget what you did for me with this article.
From the deepest part of this mother’s heart, thank you for making the world say Leebo’s name.
Keep going forward don’t stop auntie Vanessa love you guys yall are the best advocate for rare diseases community as the sickle cell community as a whole
Absolutely love your style of writing. Thank you for putting our feelings into words others will appreciate and understand.
The shift described here is bigger than “patient engagement.” It is a transfer of authority.
People living with sickle cell are not supporting evidence for someone else’s strategy. Their lived experience is expertise—and it should shape what gets researched, funded and built from the beginning.
The next chapter cannot simply invite the community into rooms designed without them. The community must have the power to design the room.
Dr. Holden,
The way you tell our story is powerful! It’s poignant, beautiful, and we are heard. Keep doing what you are doing. Hopefully one day can do as DeMitrious said, become a collective vs fragments. You see it everywhere else except in the sickle cell community & we’d have the largest number
This is a wonderful article! The struggle of advocating for yourself is a very important topic when the medical field can sometimes rob you of that voice. Showing how to advocate for yourself when it comes down to sickle cell, a disease that can often be hidden outwardly, is more than necessary.