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At just three months old, Victoria Gray became unconsolable while receiving a nighttime bath from her mother. Originally thinking it was a dislocated shoulder from the time of her birth, a trip to the emergency room led Victoria to be diagnosed with sickle cell disease.

These sickle cell crises continued to worsen throughout Victoria’s life. Her first memory of a crisis happened at four years old where she experienced shooting pain across her chest and into her arms, fatigue, and continued pain that left her hospitalized for a week. These crises continued unprovoked throughout her childhood and into early adulthood.

In October 2010, Victoria experienced a sickle cell crisis that left her unable to use her arms and legs because of the severe pain, and any medicine she received did not provide relief. As the crises became more severe and painful, Victoria was unable to continue her dream of becoming a nurse, and she wasn’t able to spend enough time with her husband and children as she would have liked because of consistent hospital visits and being bedridden.

After over 30 years of crises and severe pain, Victoria prayed for something to change. After months of an experimental cell treatment, four rounds of chemotherapy and blood transfusions, Victoria woke up pain free after 34 years of sickle cell pain and crises. Today, she celebrates five years of being symptom-free.

In her own words, Victoria shares her sickle cell journey and her path to working as a full-time patient advocate and international speaker.

The beginning of my sickle cell disease started with something as simple as my mom giving me a nighttime bath when I was three months old. I began to cry, and I was unconsolable. Thinking it was a dislocated shoulder from the time of my birth, my mom took me to the emergency room. After multiple tests and exams, I was diagnosed with sickle cell disease, and I was having my first sickle cell crisis.

This day was repeated throughout my whole life.

The earliest memory I have of a crisis was when I was four years old. I had a great day at school, and when I got home to go outside and play, a shooting pain spread across my arms and into my chest. Then, pain engulfed my whole body.

After rounds of Tylenol and hot towels that didn’t suppress the pain, I ended up in the emergency room to receive morphine, IV fluids and a blood transfusion.

These crises would come and go throughout my childhood years. Sometimes I could go for two to three months without a crisis and then it would happen unprovoked.

Later, after dealing with many crises that weakened my immune system, I became restricted from all forms of exercise. I couldn’t be a cheerleader like I wanted to be, couldn’t participate in gym class, play basketball and more because any exertion would send me into a crisis. My whole life at this point was a lot of pain and disappointment.

Going into my senior year of high school, I signed up to join the Navy. Before basic training, my recruiter called to tell me that I didn’t qualify to join the armed forces because of my sickle cell disease. Being a woman of faith, I kept dreaming and decided to go to college to try and be a cardiologist. The career center instructed me not to pursue this path, so I switched to nursing.

I had to start nursing school over again many times for seven years due to missing exams and classes because of consistent crises that would leave me hospitalized or too sick. Then, in October 2010, just before I was accepted into nursing school, I had the worst sickle cell crisis I had ever experienced.

I lost the ability to use my arms and legs, and the pain was so severe that I cried and stayed awake for three days. Even with the highest dose of pain medicine I could receive, the pain was too severe for me to even lift my hips high enough to use the restroom, so I soiled myself.

After this crisis, I needed rehabilitation to learn how to walk and use my legs again. Standing and doing simple tasks like walking, trying to get into the bathtub and bending were difficult because my red blood cells were sickled for so long, and they deprived my muscles of the oxygen they needed.

I gave up on my dream of being a nurse and decided to come home after rehabilitation to my husband and children to focus on being a good parent. After I came home from rehabilitation, I was still having crises and going to the hospital, and this took me away from my husband and kids.

My husband is in the military, and before he deployed to Iraq in 2011, I couldn’t say goodbye to him because I was unconscious in the hospital. The pain was so severe from a recent crisis that I had to be sedated. My husband left for Iraq without knowing if I would survive. The hopes of being a good wife and a good mother were hanging by a thread.

Another challenge that can come with sickle cell disease is hospital stigma. There were many times when I would arrive at the hospital in a sickle cell crisis and the nurses and doctors didn’t believe my pain was real. Sometimes I would be in immense pain and wait six to eight hours for the pain medicine that I needed to calm down the crisis.

One time, a nurse said, “I feel bad for you sicklers because you can’t tell the difference between your body going through withdrawal from the pain medicine or if you’re actually in here for a crisis.”

This was a crushing blow, and it affected me very mentally. I could say that my pain was at a 10 on the pain scale, but because sickle cell pain doesn’t show on the outside, they wouldn’t believe it.

I experienced mistreatment from people whose job it was to me for care and help me feel better. Sometimes the nurses would tell me they were giving me pain medicine and it would only be saline that I was receiving.

There was another instance when a nurse pushed double the amount of a sedative into my system that a patient should receive, and it sedated me for multiple hours, but did nothing for the pain. I woke up and my pain was fully escalated, but hardly anything was done to control it.

At this point, I wanted to give up. I made my peace with dying, and I felt that I would only feel peace and relief if I went to Heaven.

One day, I got a phone call from my son’s teacher at his school. I was informed that my son was acting out and not behaving like his usual self. His teacher told me he was afraid I was going to die while he was at school, and that he wanted to be home with me in case he needed to save me.

This is when I got energy and motivation. If my life was already causing my children this much pain, then what would my death to them? I began to ask God to spare my life instead of taking it. I wanted to zip my daughter up in her wedding dress one day. I wanted to watch my sons graduate and become successful.

My next crisis came right around the corner, and I was back in a familiar situation. The pain in my chest was awful. I could barely breathe. I was getting mistreated by hospital staff, again. I was in some of the worst pain of my life.

I couldn’t go on living like this. I got on my knees and asked God to send me something that would take this pain away.

Three weeks later, I got a call from my hematologist that a Nashville hematologist had reached out to her by email and asked if I wanted to undergo a haploidentical transplant, which is a type of bone marrow transplant using stem cells from a half-matched donor, often a parent, sibling, or child.

I traveled to Nashville with my brother and husband, and after testing, my brother was a suitable match for the transplant. There were many risks involved, but I had to do this for my family.

Then, another crisis came, which pushed back testing and the transplant. I was in the hospital for a week. Dr. Haydar Frangoul, the Medical Director of Pediatric Hematology in Nashville, approached my bedside and asked if I had ever heard of CRISPR gene therapy.

If I was interested, I would be the first person ever to undergo this clinical trial. In non-medical terms, he explained the process as going into a book with thousands of words, finding the one word that was misspelled and correcting it, without disrupting the story.

In medical terms, the goal was to turn on my BCL11A switch to start producing fetal hemoglobin again and, if this was successful, it would limit the number of crises I was having and limit hospitalization for my symptoms.

I said “yes” to the trial because this was my answer from God. I wanted to live again.

Before the start of the trial, the doctors gave me healthy, red blood cells from a donor. I was still experiencing crises, but they weren’t as bad.

The next phase involved receiving stem cells into the back of my arm, then pulling my blood out, spinning it, and collecting the stem cells back. This process lasted six days. I then went back home to Mississippi for about two months.

The next phase was conditioning, which meant four days of chemotherapy. After some rest and recovery, it was time to receive my new cells. I had a catheter placed into my chest, and four valves were pushed to into the catheter for me to receive the cells.

After my doctors left the room, as well as the camera crews who were documenting my treatment, I began to cry. Thirty-four years of suffering for four valves to be pushed for me to live again and be free.

I experienced some aftereffects of the chemotherapy, including losing my hair and painful mouth sores. I also had gallstones removed. But after finishing inpatient therapy for these symptoms, I was able to come home after two months.

My kids saw my husband and I pull into our driveway, and they took off running into my arms and we had the biggest embrace.

There was still a waiting game to see what my body would do. I wasn’t experiencing a crisis, I didn’t have to visit the emergency room, but I was at home with a compromised immune system and I was on a lot of medicine. I worked with Dr. Frangoul to taper off the medicine to see where I stood, health wise.

A week later, I woke up and my room was extra bright. It was quiet, and I had to pinch myself to realize that I was alive.

I woke up for the first time in my life with no pain. I didn’t have to take deep breaths. The usual pain I felt in my lower back and hips was gone. I couldn’t believe it.

This has continued to this day. I’m able to experience normal everyday things without worrying about going into a crisis or missing out on events in my family.

CRISPR changed my life. Not only did it free me, but it freed my entire family.

Now, I travel and advocate for patients just like me. I try to be a light and spread hope to patients who are suffering with sickle cell and mistreatment in the healthcare system.

I speak with doctors and manufacturers and remind them how important their work is, and I get to discuss what I would like to change in the industry. I want patients to be able to trust their healthcare team and know that they’re in good hands with treatment.

One day I had a talk at a facility while I was travelling for patient advocacy, and I discussed how I would one day like to have my own foundation for sickle cell patients. This is how I became introduced to the Emily Whitehead Foundation and how I met Tom Whitehead.

I learned about Emily’s story with CAR T-cell therapy, and I was invited to the Foundation’s Believe Ball, where I essentially became family with everyone. They really care about patients, fairness in healthcare and amplifying patient stories.

This is why I tell my story. No matter how hard it is to dig my emotions out again, it’s necessary to tell because people are suffering. The pain that comes with sickle cell is hard to describe, so if I can help someone be pain free like me, that’s worth it.

If it’s not me who advocates for them, then who?

Now, I’m enjoying life. I’m a full-time patient advocate and international speaker. I’m enjoying being present for my family’s adventures and milestones. I’m enjoying the small things.

We receive messages from patients and families around the world with experiences similar to Victoria. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find a treatment center where they can access advanced therapies.

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