Victoria Gray
Gill chatted with Victoria Gray to learn about her life as a sickle cell warrior and patient advocate for people living with Sickle Cell Disease.
Introducing Victoria
Victoria Gray is a mother, public speaker, sickle cell warrior, patient advocate, and a wife living in Mississippi. She was diagnosed with Sickle Cell Disease (SCD) at three months old. At age 33, Victoria became the first person in the world to receive a CRISPR-based gene editing treatment for SCD. Since then, she has dedicated herself to her family and to advocating for other sickle cell warriors.
Since first learning about Victoria in 2019, she has played an important role in PGED’s learning materials about gene editing and SCD. Our team was thrilled to meet her for the first time in 2025, when she joined our November forum as a panelist. Forum attendees were deeply moved by her raw and real storytelling. We now have the privilege of sharing some of her life’s story with you.
Gill: Tell me a bit about yourself.
Victoria: I am a mother. I have four kids, but I gave birth to three; my fourth is my bonus daughter. I am a nana now, as well. Public speaker, sickle cell warrior, patient advocate, and a wife. I’m a person who leads with my heart.
I love the simple things in life because I went so long without being able to enjoy them. I enjoy caring for myself and my family, relaxing, going for walks, and reading. I like action books, and I like real stories like autobiographies. I’m into audiobooks because I don’t have a whole lot of time to sit down and read, but I miss turning the pages. I used to do that a lot when I was younger. That was my way to get away from the world, my situation.
Gill: What happened during your childhood?
Victoria: I was diagnosed at three months old with Sickle Cell Disease (SCD). I had my first crisis at three months. During my childhood, the pain and the title of ‘sickle cell disease’ were restricting. My hematologist told my grandmother, who I lived with, that I couldn’t have any type of exertion. I couldn’t get too hot, and I couldn’t get too cold. I would have to sit out when other kids played during PE in school. I wasn’t allowed to participate in any activities at the gym. It left me feeling a little odd and out of place. I felt isolated. All the things I wanted to do and to be, just feel normal and interact with other kids, were restricted.
Gill: What other kinds of barriers did you face because of SCD?
Victoria: I wanted to join the cheerleading team and to play basketball, but I was always told no. If my hematologist said I couldn’t do something, my grandmother was strict on following that. She wanted what was best for my health. Even when I was home, my time spent outside with my brother and family would be limited. I could only play for a few minutes before I would have to come in and take a long break.
Because I couldn’t play outside for very long, one of my teachers, Ms. Adams, started giving me books to read. I would take them home and spend hours reading because it sparked my imagination. A good book is very descriptive – you can see the scenery and hear the sounds and take yourself to that place. That’s how I had my action, my adventure, through books like the Goosebumps Series, Sounder, and books that told African-American stories. My childhood was in those stories.
As I grew older, my medications changed. They caused my vision to blur anytime I put a page in front of my face. I couldn’t read my books anymore, and it created a hole in my life. And honestly, a sense of anger with God. I’m a woman of faith. I grew up in the Church of God and Christ. And so when I lost the ability to read my books because of the medications that I was on, I was like, “God, why did you make me so smart if this is going to be my life? I can’t read my books. I can’t learn new words. What am I here for?”
Gill: How did you cope with the pain of these restrictions?
Victoria: A nurse introduced me to YouTube and suggested I watch some videos. Videos about makeup for brown skin caught my attention. I had never worn makeup before, and I even went to my high school prom without makeup. I just never knew anything about it. And so once I saw how other ladies applied makeup, I bought some makeup on sale. When I got home from the hospital, I would watch videos and learn how to do my makeup.
Gill: As you moved into adulthood, how did your life change?
Victoria: As my disease progressed, I lost the ability to care for myself and my children. I had to have a personal care assistant. It hurt me, as a woman, a wife, and a mother, to have other ladies clean my home, help me get dressed, make my children’s beds, and prepare meals. I wondered, what am I here for? That was my question for God. I kept thinking, “I know you can heal me. I had faith. I’ve been praying. You have to have more for me in this life than this. I know you didn’t bring me here just to watch me suffer.”
I wanted to be a doctor. I tried, but I couldn’t. I decided to go into nursing, but by the time I was able to qualify for the program, I had a bad crisis. I lost my ability to walk and to use my arms, and needed physical therapy. That’s when I started to long and pray for death, because I couldn’t enjoy the simple things. I couldn’t go to the park with my kids when they wanted to play. Even when we bought them a trampoline for the backyard, I couldn’t get on it with them. My God, I had someone else washing their clothes and fixing not only their meals but mine. I was failing at being a mother. Worst of all, my children were suffering because their life was limited – because of mine.
Gill: How was your relationship with your doctors, and the hospital experience generally, at this time?
Victoria: Every time I went to the doctor, it was bad news. My doctor was my primary care physician, and he reminded me so much of Dr. House. He was very intelligent, but his bedside manner was horrible. But I couldn’t stop going because I knew he was so smart, and if anybody had the answer, he would. When I developed my heart condition – an enlarged heart – and they said I was in congestive heart failure, I went to him, thinking he was going to know how to help me. But his reply was just, “Oh yeah, that’s what usually takes you sicklers out.”
Comments like that, while you’re in the worst pain of your life, make you contemplate, do I stay at home and wait for my heart to stop from this pain, or do I deal with the judgment, the stigma, the hatred? Because that’s what it felt like. They didn’t care who I was – that I was a mom or that other people loved me. I was just a “sickler” to them. That was the worst part of having sickle cell disease; it was not the disease itself, but feeling like the people in healthcare I trusted didn’t care about me.
I remember times when my nurses and doctors said that sickle cell patients were addicts, and that I was an addict. A nurse standing over me in the ER once said, as he’s hanging my IV bag, “I feel so sorry for you sicklers. You guys have to take so much narcotic medicine that you can’t tell the difference between being in withdrawal and a real pain crisis.” That was what made me cry – not the physical pain in that moment, but how his words hurt. Anyone who’s interacting with sickle cell warriors should be mindful of their words. Even if you apologize, people will never forget what you said.
Gill: You were the first person to receive a CRISPR-based treatment for sickle cell disease. How did that feel?
Victoria: I was about to turn 34 years old when I received my CRISPR-gene edited bone marrow transplant. The first medical change I noticed was that my hemoglobin and hematocrit numbers were stable. I hadn’t had a blood transfusion in months, even though I was getting my blood taken out and replaced every three to four weeks before then.
I began to taper off the pain medicine. Once I tapered and went through the withdrawal, I went to bed one night, and when I woke up, the room seemed extra bright. The house was quiet. I didn’t feel anything; I didn’t have any restrictions in my chest. My immediate reaction was, oh my God, I’m dead. I started to panic. I pinched my face and my thighs. I called my kids in to see me, and they came into the room asking what was wrong. I said, “Nothing, I just want to feel you”. The feeling of nothingness was something that I thought I would only experience in death. I wasn’t sure that I was actually alive.
Gill: What has life been like since receiving the treatment?
Victoria: As the days went by, I started racing with my boys in the backyard for the first time. I fell – because I have no athletic abilities – and my phone flew out of my back pocket. My boys were laughing. And then I started jumping on the trampoline with them, and when I got tired, they bounced me. I was out there for over an hour with them. But it didn’t end with me having to get swept away to the hospital.
I went to my son’s football game, and I saw him looking at me from the stands. He saw his mother, and he said, “Coach, put me in. My mom’s here”. My daughter joined the dance team, and it was an honor for me to do her makeup and to stand in the cold during the Christmas parade and watch her dance. Previously, my face was missing from the crowd. But now I’m here. That’s the biggest difference in my life.
Gill: What do you wish people without a sickle cell warrior in their life understood about your lived experience with SCD?
Victoria: I wish people understood that we don’t usually present how people think people in pain will present. The screams and the looks of agony are not always there. We appear strong and that we have it all together because that’s the only thing we really have control of. As a patient, I used to present with a calm and soft-spoken attitude. I had to learn to control my breathing while in pain, because rapid breathing and deep breathing would cause my chest to hurt worse. So, I just wish people understood that you can’t always see pain on the outside.
Gill: You’re working on a lot of projects right now to share your story with the world. What are you planning to focus on in 2026?
Victoria: One personal goal is to get more fit. I hiked with Sickle Forward last year in September, but I didn’t summit the tallest mountain. It’s hard because I haven’t exercised like that for most of my life, but I want to hike again. When I’m challenged, I don’t give up. So I’m going to get more fit this year.
I also want to do more in advocacy. I want to partner with more warriors, hear their stories, share my stories, and make the biggest impact that I can. I want to go to D.C. and talk about how important it is to invest in research because people are suffering. If we don’t invest in scientists and research, the things that sound outrageous in science fiction but could really help us, won’t become reality. It’s my reality now, and I want that for others. I want to have conversations with people who can make a change for people who need it. People on Capitol Hill should know how science is changing lives, and I am living proof. I want to use my voice in every way possible to share my story and to watch other warriors share theirs.
Gill: What’s one hope you have for other sickle cell warriors?
That every warrior would have their own type of cure, whatever that looks like for them. My prayer for a cure was, God, I’m okay with the title of sickle cell disease, I just don’t want the symptoms. Because of my CRISPR treatment, now I’m asymptomatic. That’s my hope with all the advancements that are going on – that we have cures and treatments for every warrior, even the warrior that has had a stroke, a heart attack, who doesn’t qualify for gene therapy – there will be a treatment that gives them peace to enjoy the simple things in life.
Gill: Is there anything else that you would like to share with our audience?
The three-month-old baby that the doctors said wouldn’t live to see seven years old is now a 40-year-old thriving woman with four kids, a husband, and a granddaughter. I want people to know that miracles are still happening.
